INFORMATION SERVICES FOR HIV/AIDS: RECOMMENDATIONS TO THE NIH

Report of a Conference Co-sponsored by the National Library of
Medicine and the NIH Office of AIDS Research

June 28þ30, 1993



     U.S. Department of Health and Human Services
     Public Health Service
     National Institutes of Health

     NIH Publication No. 94þ3730

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CONTENTS

Preface

Executive Summary

Introduction 

Findings and Recommendations

   Panel 1: Clinical Researchers
   Panel 2: Medical, Dental, and Nursing Providers
   Panel 3: Allied Health Care Providers
   Panel 4: Media and the General Public
   Panel 5: Patients and the Affected Community

Appendices 

   Appendix A: Guide to NIH HIV/AIDS Information Services
   Appendix B: List of Exhibitors
   Appendix C: Conference Agenda
   Appendix D: NIH HIV/AIDS Information Services Conference 
   Planning Committee
   Appendix E: Panel Members and Co-Chairs
   Appendix F: Case Study Synopses
   Appendix G: Conference Participants

Glossary

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REFERENCES

(1) AIDS: An Expanding Tragedy, the Final Report of the National
Commission on AIDS, June 1993.

(2) Bridging the Gap: A Workshop on HIV Treatment Information
Dissemination, February 25-26, 1993, Washington, DC.

(3) JAMA, 269, No. 24, p. 3096, 1993

(4) Lancet, April 3 1993, 341(8849): 889-90.


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PREFACE

In an effort to survey its customers, the National Institutes of
Health had decided to sponsor a conference of users of its various
HIV/AIDS information services. Subsequently, President Clinton
called on all Federal agencies to conduct this type of review. The
conference took place at the National Library of Medicine on June
28þ30, 1993.  In attendance were some 200 health care providers,
scientists, information specialists, journalists, and members of
the HIV/AIDS community. 

The purpose of the conference was to review the various HIV/AIDS
information resources and services that the National Institutes of
Health has instituted since the beginning of the AIDS pandemic. We
began by briefly reviewing the many intense efforts to organize and
disseminate AIDS information. The goals were to assess our current
efforts and to identify additional needs. Based on the
presentations, discussions, and resulting recommendations, the
conference was a great success.

Information, whether on paper or in electronic form, is crucial in
the fight against AIDS. If scientists are to uncover the secrets of
the AIDS virus and to develop ways to defend against and fight it,
if health care providers and patients are to work together to apply
what is known, if the public is to know how to protect itself
against HIV/AIDS, then we must ensure that our mechanisms for
disseminating information are efficient and, most of all,
effective.

This report is intended for wide circulation in the hope that it
will both alert the HIV/AIDS community to the services that are
presently available and, based on the recommendations contained,
serve as a guide to the NIH in improving those services. We at NIH
look forward to working with the HIV/AIDS community in ensuring
broad dissemination of vital information.

The report is the product of much work and discussion by the
invited participants. To them, and to the staff who organized the
conference, go the thanks of all who are involved in fighting this
disease.



Donald A. B. Lindberg, M.D.
Director, National Library of Medicine     


Anthony S. Fauci, M.D.
Director, NIH Office of AIDS Research

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EXECUTIVE SUMMARY

The National Library of Medicine (NLM) and the Office of AIDS
Research (OAR) of the National Institutes of Health (NIH)
cosponsored an invitational conference on June 28þ30, 1993, to
examine the role of NIH in providing HIV/AIDS information.  The
conference brought together representatives from many of the
constituencies involved in the AIDS epidemic to discuss their
information needs and expectations from NIH and to elicit from them
specific observations and recommendations for improvements.  The
conference was structured around five groups of information users;
the following briefly summarizes the major points of their
discussions.

CLINICAL RESEARCHERS are faced with the need both to disseminate
the results of their research quickly and to, themselves, obtain
the information required to carry out their research.  In addition
to the need to release research findings immediately, it is also
important that these data be interpreted for those who will use
them.  A variety of dissemination mechanisms were discussed.
RECOMMENDATIONS 1.1 and 1.2 concern the timely and effective
release of information from clinical trials.

Some clinical researchers are part of networks that conduct
research in a coordinated way.  Members of these networks or groups
regularly exchange information informally and formally at group
meetings.  However, those who are not members of these groups, or
who do not attend their meetings, are denied valuable, and
sometimes essential, information. RECOMMENDATION 1.3 calls on NIH
to disseminate widely final statements and other information from
such meetings.

Clinical researchers and others have access to descriptions of
HIV/AIDS-related clinical trials being conducted in the United
States through such resources as the AIDSTRIALS database on the NLM
MEDLARS computer system and via the AIDS Clinical Trials
Information Service (1þ800þTRIALSþA). However, there is additional
information that would benefit this group. RECOMMENDATIONS 1.4 and
1.5 are to expand the scope of information in AIDSTRIALS, including
the addition of information about non-U.S. clinical trials.

Clinical researchers, like most other groups using information
resources, obtain their information in many ways.  Therefore, it is
important that many different avenues be used to provide it.
Clinical researchers could benefit greatly by taking advantage of
advanced technologies for communication, collaboration, and
research. RECOMMENDATIONS 1.6, 1.7, 1.8, and 1.9 deal with
alternative methods of information dissemination and how NIH can
encourage and support the use of electronic information resources.

MEDICAL, DENTAL, AND NURSING PROVIDERS have information needs
significantly different from those of clinical researchers.  In
analyzing their needs, it is apparent that physicians, dentists,
and nurses each have developed their own preferred routes for
obtaining information.  All rely to some extent on colleagues, and
RECOMMENDATIONS 2.1 and 2.2 encourage NIH to foster existing
practitioner-to-practitioner pathways and to support conferences
and workshops that encourage this information exchange.

Busy practices limit the time health care practitioners can devote
to keeping up with new research reported in the literature,
analyzing the results, and determining how this affects the
treatment plans for their patients.  Some practitioners may not
have the expertise to do this type of synthesis for HIV/AIDS. 
Thus, it is important that analyzed, synthesized, and integrated
information be available to support optimal patient care.
RECOMMENDATION 2.3 calls on NIH to apply electronic technology to
creating and distributing summative HIV/AIDS information. 

One reason electronic information resources are underutilized by
health care providers is the level of expertise required for
accessing them. RECOMMENDATION 2.4 is that NIH develop
user-friendly electronic information systems and provide training
and affordable access.

Often training, educational, and outreach programs are established
by a single agency to serve one need.  In many cases these programs
can be expanded to serve multiple purposes.  RECOMMENDATIONS 2.5
and 2.6 call on NIH to work with other organizations to do this,
tailoring training programs to specific care settings for
physicians, dentists, nurses, and other health care workers.

Health care providers in isolated settings, such as those in rural
areas and on Native American reservations, find it especially
difficult to obtain up-to-date HIV/AIDS information.  They lack
ready access to colleagues and institutions that could provide them
with information. Identifying and serving such health care
providers is the subject of RECOMMENDATION 2.7.

Health care providers need information about the results of
clinical trials both quickly and with sufficient detail to evaluate
the information.  A press release suitable for use by the popular
press and the general public does not give physicians and other
health care providers the details they need to determine what
modifications are needed in the care regimens of their patients. 
RECOMMENDATION 2.8 concerns the release of information about
clinical trials sufficient to allow health care providers to
evaluate its applicability to their patients.

Traditionally, the peer-review function for medical information is
fulfilled through publication in medical journals. This process can
sometimes take more than a year, and may be much too slow for such
a rapidly moving field as HIV/AIDS.  Press releases and other types
of releases without peer review may not benefit either the health
care provider or the patient.  RECOMMENDATION 2.9 calls on NIH to
convene expert panels for rapid peer review and release of clinical
trial results, when such expedited handling is warranted.

"Clinical Alerts" are used by NIH to disseminate the results of
clinical trials in urgent cases before formal release or
publication of findings. This mechanism allows broad dissemination
of clinical trials results in cases where the information can have
a profound effect on health care. However, it is clear that
Clinical Alerts are not reaching all who can benefit from them.
RECOMMENDATIONS 2.10, 2.11, and 2.12 call on NIH to use Clinical
Alerts for urgently needed HIV/AIDS information, and to ensure that
they reach all health professionals.

Health care workers need guidelines to follow in caring for their
patients.  A concise, comprehensive manual would ensure that
providers have basic patient care information no matter what the
setting.  Since the treatment of AIDS patients is such a rapidly
changing field, guidelines must be kept up-to-date. RECOMMENDATION
2.13 calls for NIH to collaborate with CDC, the Agency for Health
Care Policy and Research, and HRSA in the development and promotion
of HIV/AIDS patient management guidelines for  the various segments
of the health care provider community.

ALLIED HEALTH CARE PROVIDERS, social workers, therapists,
nutritionists, case managers, etc., often the provider with whom
the patient has the most frequent and regular contact, work in
varied settings, not necessarily in institutional environments
where resources are readily available. RECOMMENDATION 3.1 deals
with reaching out to unaffiliated allied health professionals to
provide them access to information resources.

Because allied health care providers work in such diverse settings
and with many different communities, their information needs are
complex and varied.  In addition to standard medical and nursing
information, they must deal with other problems and questions from
their clients, particularly cultural and behavioral issues.
RECOMMENDATIONS 3.2, 3.3, and 3.4 concentrate on the importance of
information emanating from NIH's support of psychosocial, substance
abuse, and nontraditional therapies research.

Particular burden is placed on the allied health care provider
because of the disparate nature of the information required by this
group and the technical nature of that information.  There is no
single outstanding source of information for allied health care
workers working with the HIV/AIDS community. For these reasons,
RECOMMENDATIONS 3.5, 3.6, and 3.7 call on NIH to explore new models
of information access, to provide jargon-free summaries of current
information, and to provide training in using electronic
information resources for allied health care providers.

Allied health care providers use professional organizations and a
number of other techniques to network and share information.
RECOMMENDATIONS 3.8, 3.9, 3.10, and 3.11 deal with how NIH should
develop partnerships with both professional and community-based
organizations to disseminate information, use existing networks of
religious and ethnic organizations, and support the development of
access tools for the contents of informal information sources such
as newsletters.

THE MEDIA is the main vehicle NIH uses to reach the public. This
group has very specific information needs. RECOMMENDATION 4.1
confirms this and calls on NIH to work closely with the media at
all levels to disseminate information about HIV/AIDS.

Despite the fact that the public generally receives much of its
information about HIV/AIDS from the media, journalists generally do
not perceive their primary function to be education.  Because of
the occasional lack of balance and context in stories, the public
may be misled by what they read or hear. RECOMMENDATIONS 4.2, 4.3,
and 4.4 call on NIH to be aggressive in rebutting misinformation,
to encourage sidebar stories with background and context, and to
encourage the publication of telephone numbers so readers can
request further information.

Access to sources of information is important to journalists
preparing their reports.  NIH scientists are not always readily
available to talk with the media nor are they always adept at
presenting their points of view. RECOMMENDATIONS 4.5 and 4.6 are
for NIH to provide training in media relations to scientists and to
clarify its own policies about journalists' access to NIH
scientists.

When scientists do talk with the media, the information they are
trying to impart is frequently highly technical and complex. 
Journalists may not always be able to interpret this information
accurately. To help remedy this, RECOMMENDATIONS 4.7 and 4.8 call
on NIH to seek out and help writers who serve minorities and the
alternative media, to have a toll-free number for journalists at
all levels, and to expand the NIH radio news service.

NIH cannot continue to rely on the traditional print and electronic
media as its only way of reaching the public with information.
There are many other means that are available, and RECOMMENDATIONS
4.9 and 4.10 describe several other channels that NIH should
explore, including library-based mechanisms.

PATIENTS AND THE AFFECTED COMMUNITY (families, friends, and
advocates of those with HIV) need information to manage their care
and make informed decisions.  Many feel isolated from information
resources. RECOMMENDATION 5.1 calls on NIH to make information
accessible where affected individuals spend time, for example,
social services offices and relevant medical clinics.

In addition to information for their own decision making, patients
want to feel secure that their health care providers have the
latest and best information and therefore can provide the highest
quality care. RECOMMENDATIONS 5.2 and 5.3 deal with getting
HIV/AIDS information to health care providers and with supporting
health educators who work with patients and their families.
 
Community-based organizations have been providing services to their
communities since the early stages of this epidemic. There is a
continuing need to do this and even to expand these services as new
individuals and communities become involved.  This is true not only
for direct health and social services, but for information services
also. RECOMMENDATION 5.4 calls on NIH to help community
organizations provide HIV/AIDS prevention and treatment information
to patients and their families.

HIV-infected people and their advocates want information about
research results and treatment options as soon as possible, but
only if it is assured to be accurate. The traditional publication
process for peer-reviewed data causes some concern that those who
want newly developed data quickly cannot obtain it.  The results of
clinical trials are important to those participating in them and
important to their communities as well.  RECOMMENDATIONS 5.5, 5.6,
and 5.7 deal with NIH disseminating both to participants and to
patients at large information resulting from HIV/AIDS clinical
trials and about alternative therapies.

It is particularly evident that the psychosocial aspects of HIV
infection have a profound impact on persons with HIV. However,
information about psychological and behavioral issues is scarce. 
RECOMMENDATION 5.8 calls on NIH to include more information dealing
with the mental health aspects of HIV/AIDS.

There are a number of effective means for reaching different
racial, cultural, ethnic, and sexual communities affected by
HIV/AIDS.  Community leaders and organizations can assume this role
because of the high level of credibility they have within their
communities.  The community groups can channel information between
the government and their members and can develop different means of
doing this. RECOMMENDATION 5.9 deals with how NIH can assist
community groups in getting information to their constituencies.

Many community groups rely on newsletters as a main means of
communicating.  Some of these newsletters are valuable resources
even outside their local community. RECOMMENDATIONS 5.10 and 5.11
call on NIH to assist these newsletters and to develop an online
and printed index that will make their articles more widely
available.

Despite the tremendous potential of electronic information
resources, many members of the affected community do not have
access to them. RECOMMENDATIONS 5.12, 5.13, and 5.14 call on NIH to
facilitate access by the affected community to electronic
information sources and to make NIH's electronic HIV/AIDS offerings
available to this community at no cost. 

One of the major barriers to the use of HIV/AIDS information by
patients and the affected community is language and literacy.
Furthermore, the technical terminology used to describe complex
clinical research, treatment options, etc., can be difficult to
understand.  RECOMMENDATION 5.15 deals with how NIH can make
information more readily available to  such audiences.

Those who seek HIV-related information may prefer to find it on
their own, without attracting attention to their HIV status. Public
libraries, available in most communities, are a neutral resource,
usually accessible to all. RECOMMENDATION 5.16 calls on NIH to
provide brochures and other useful information to public libraries.

Many in the community are unaware of the breadth and variety of
AIDS information resources available from NIH.  The Guide to NIH
HIV/AIDS Information Services, distributed at the conference, is a
good survey of those resources. The community could benefit from
this type of knowledge about NIH's services. RECOMMENDATION 5.17
calls for its wide dissemination.

There is much confusion outside the Public Health Service about the
perceived lack of coordination and the duplication of efforts by
the government. RECOMMENDATION 5.18 calls for NIH to work with
other Federal agencies to coordinate HIV/AIDS information services.

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INTRODUCTION

The AIDS pandemic is inextricably linked to everyoneþs ability to
obtain needed information that can "make a difference." The
National Library of Medicine (NLM) and the Office of AIDS Research
(OAR) of the National Institutes of Health (NIH) cosponsored an
invitational conference on June 28þ30, 1993, to examine the role
that NIH is playing in providing such information. The meeting
involved broad-ranging discussions among members of the various
constituent groups who need and generate HIV/AIDS information. A
guide to currently available NIH HIV/AIDS information services was
prepared as background material for conference participants. [See
Appendix A.] In addition, exhibits displaying many of these print
and electronic resources were organized for viewing and hands-on
demonstration in the NLM lobby. [See Appendix B for the list of
exhibitors.]

SETTING THE STAGE. On the afternoon of the first day, the
conference was formally opened by NLM Director Donald A.B.
Lindberg, M.D. OAR Director, Anthony Fauci, M.D., provided
conference participants with an overview of the current status of
AIDS research and events at the recently concluded international
AIDS congress in Berlin. June Osborn, M.D., Dean, University of
Michigan School of Public Health, and Chair, National Commission on
AIDS, gave the keynote address, which included remarks on the
just-released report of the National Commission on AIDS.(1) Debra
Fraser-Howze, Executive Director, Black Leadership Commission on
AIDS, concluded the opening session with a brief report of a
workshop convened early in 1993 that addressed the challenge of
disseminating HIV/AIDS treatment information to persons in
underserved communities.(2) [See Appendix C for the complete
conference agenda.]

CONFERENCE OBJECTIVES. As identified by the Planning Committee [see
Appendix D for a listing of members], the major objectives of the
NIH HIV/AIDS Information Services Conference were:
*   To assess the adequacy of NIH's HIV/AIDS-related information
    products and services in relation to the multiple and varied
    audiences for which they are intended. That is, do these
    resources provide users with the information they need, when
    they need it, and in a form they can readily use?
*   To inform the conference participants, and by extension the
    community at large, of the full range of HIV/AIDS information
    services that are currently provided by NIH, and to do so in
    the context of HIV/AIDS information services provided by other
    U.S. Public Health Service (PHS) agencies and nongovernmental
    organizations.
*   To involve all user communities, in particular HIV-infected
    individuals and their advocates, in helping to shape current
    and future NIH information services.

THE PANELS. Following an overview of current NIH and PHS
information activities, the core of the conference on the second
day consisted of panel discussions, held in plenary, of the issues
pertaining to the need for and use of HIV/AIDS information by each
of five target user communities or audiences:
*   Clinical Researchers
*   Medical, Dental, and Nursing Providers
*   Allied Health Care Providers
*   Media and the General Public
*   Patients and the Affected Community

In addition to several representatives from the target community
that defined the focus of each panel, membership of each panel also
included at least one information provider and one representative
of the affected community. This conference marked the first time
that these diverse groups have been brought together to consider
the role that information services can play in their professional
and personal lives. [See Appendix E for a listing of panel members
and co-chairs.]

To initiate and stimulate discussion, each panel used a case study
that described both successful and unsuccessful experiences in
obtaining HIV/AIDS-related information. [See Appendix F for
synopses of the case studies presented to the five panels.] Each
case study presentation was followed by a panel discussion of the
specific issues raised by the case, and the broader issues
important to the user community under discussion. The panels
considered issues of content, access, and dissemination mechanisms
pertinent to each category of user. Participation by the audience
in the discussions also provided significant input to the
conference findings and conclusions.

OUTCOMES. The panel discussions were then followed on the third day
by a meeting of panel co-chairs and the conference Planning
Committee. At this meeting, the observations, findings, and
conclusions that were put forth during the previous day's
discussions were systematically identified and evaluated. A draft
conference report was subsequently reviewed by panel members and
co-chairs. Its recommendations are intended to reflect the views of
the HIV/AIDS community of users as represented at this conference.
Within the constraints of NIH's mission and resources, it is
expected that implementation of these recommendations will result
in the provision of new and enhanced HIV/AIDS information services
by the various components of NIH. The recommendations are also
intended to foster new opportunities for collaboration within NIH,
and with other agencies of the PHS and nongovernmental
organizations. 

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FINDINGS AND RECOMMENDATIONS

PANEL 1: CLINICAL RESEARCHERS

THE CHALLENGE
The panel was composed of clinical researchers, members of the
affected community, an information provider, and a representative
of academic communication research. The initial problem addressed
was that many factors, including a dramatically increased level of
patient interest in the research process and the general public's
high level of concern about the epidemic, have created an enormous
and unprecedented "appetite" for current information on AIDS
research. The scientific community engaged in biomedical research
on HIV/AIDS, accustomed to disseminating research findings through
traditional channels of peer-reviewed publications and scientific
meetings, is still learning to cope with the new demands placed
upon it in this regard. It must also cope with its own difficulties
in obtaining the information it needs to carry out research.

FROM RESEARCH TO PRACTICE
The Concorde Study, a European clinical trial on the role of AZT in
the therapy of early HIV disease, was selected as the case study
for initiating a discussion that raised the issue of the conflict
between the desire for rapid release of medical research
information and the quality and authoritativeness of this
information. Patients with life-threatening illnesses have a desire
and a right to know the outcomes of clinical studies as soon as
possible. However, the communication of that information from the
scientific community to the popular press has not been entirely
successful. Because progress in biomedical research is largely
incremental and new research may, in fact, conflict with previous
work, it may be difficult to convey that concept to the public.
 
The panel discussions centered on the responsibility of the
clinical researchers to convey the information in the context of
prior research, and where possible, in the context of clinical
care. It is often the expectation of patients and the public that
the results of a research study will have an immediate impact upon
medical care. However, clinical researchers are frequently
reluctant to make recommendations for changes in therapy based upon
a single study. The data must be thoroughly analyzed and subjected
to some type of peer review process.

The results of clinical research affect other research and will
ultimately be translated into altered practiceþchanges in care of
patients, changes in public behavior, changes in case management.
Often it appears to be very difficult to take the research results,
translate them effectively into useful information, and disseminate
them to the various communities.
 
RECOMMENDATION 1.1
NIH should release the results of clinical trials in a timely and
effective manner. Such results should be placed in the context of
prior research and current clinical care.

In addition to being scientifically and medically accurate, the
information disseminated must be free of the jargon that may be
intelligible to only a limited audience. Since the information will
be used by diverse groupsþinfected individuals, their families, and
supportersþmore interaction with these groups in developing the
type of information they need and can use would be useful. A better
understanding of why and how studies are done may also improve the
conduct of clinical trials by assisting recruitment and minimizing
premature dropout.

RECOMMENDATION 1.2
NIH, as the sponsor of many clinical trials, should take more
responsibility for making information released about clinical
trials understandable to the patient communities, their families,
and supporters and develop mechanisms to encourage feedback
concerning its usefulness.

STAYING CURRENT
While the case study focused on some of the issues faced by
clinical researchers in disseminating the results of their work,
there are also issues confronting this group in trying to obtain
the information they need to do this work. Clinical researchers
working in HIV/AIDS are generally, but not always, associated with
academic health sciences centers or large medical centers. The
current expansion of clinical research into community-based
research means that larger numbers of those conducting the research
may not have such an institutional affiliation. Many of these
clinical researchers are part of one of the large networks of
academic and other types of organizations set up by NIH to conduct
clinical research such as the AIDS Clinical Trials Group (ACTG);
the Community Programs for Clinical Research on AIDS (CPCRA); the
Division of AIDS Treatment Research Initiative (DATRI); National
Institute of Child Health and Human Development (NICHD)-supported
clinical trials; and the General Clinical Research Centers
supported by the National Center for Research Resources (NCRR).
Information about clinical trials, including trial design and
results, may reach some clinical researchers through one of these
formal or informal communications channels. Other clinical
researchers participate in research studies under the auspices of
the Department of Veterans Affairs (VA) or one of the military
services.

Each of these groups may have regular meetings at which current and
projected studies are discussed and protocols developed and
reviewed. Only individuals who attend these meetings have timely
access to those deliberations and decisions. Others in the clinical
research community could benefit from knowledge of the
deliberations of these and similar meetings. In addition, it is
often difficult to obtain timely information from other national
and international AIDS-related meetings. In a fast-paced situation
such as exists with HIV/AIDS, clinical researchers would feel more
confident if they had facile, reliable access to this type of
information. This group expressed a desire to have the information
about the presentations, deliberations, and decisions from these
various meetings provided to them using multiple communication
mechanisms.

RECOMMENDATION 1.3
NIH should widely disseminate information, such as a final
statement, from meetings such as those of the ACTG and CPCRA. 
Multiple formats should be used for dissemination, including press
releases and telefacsimile as well as formats suitable to convey
the detailed scientific information needed by researchers.

This group of researchers found that they need information about
other clinical trials being conducted, not only in the U.S., but
throughout the world. The AIDSTRIALS database does contain
information about all the NIH-sponsored clinical trials and
privately sponsored trials that have reached the efficacy stage.
However, information about some additional clinical studies being
done within the United States is not available through that
mechanism (e.g., epidemiologic and natural history studies). There
are also numerous studies being conducted outside the United States
that are not reflected in that database. In general, researchers
require information about the design of the trials, the projected
time lines for a study, including when the results are expected to
be available, as well as the results of the trials upon completion.
This type of information is essential to reduce duplication of
studies, improve study design, and to allow researchers to direct
their research more effectively. While this type of information is
available in AIDSTRIALS for NIH-sponsored clinical trials, it is
not available for those trials with other sponsors.

RECOMMENDATION 1.4
The AIDSTRIALS database should contain information on NIH and
non-NIH-sponsored U.S. clinical trials, including:
*     The time line for the trial
*     When the results are expected
*     Results or references to where results are published
*     A statement of the project goal/research question

RECOMMENDATION 1.5 
NIH should provide access to information about non-U.S. clinical
trials so clinical researchers do not unknowingly duplicate
research going on elsewhere.

Even this group, generally thought of as sophisticated and with the
greatest access to resources, has difficulty in obtaining and
sharing its information. Many clinical researchers do not have
access to modern, state-of-the-art information resources, including
the equipment necessary to use electronic databases and to access
these resources over electronic networks, such as the Internet.
Current grants and contracts do not usually include support for
accessing information resources; therefore, this group may not make
optimum use of these resources. Researchers who are affiliated with
a larger institution may have access to library and other
information services, but these may be inconvenient to access.
Unaffiliated researchers find cost a significant barrier to 
obtaining services, both traditional library services as well as
access to electronic networks.  There was a strong indication from
the participants that many methods for disseminating the
information must be used to reach this group adequately. Although
electronic information dissemination is considered to be the þstate
of the art,' or the þwave of the future,' too few people have
knowledge of these capabilities or training in their use.
Therefore, current practice for disseminating clinical research
information cannot rely solely upon electronic mechanisms. Further,
although researchers recognize that in the future they may be using
high performance computing and communication as tools for research
and communication, they currently have limited or no expertise or
knowledge of this area.

RECOMMENDATION 1.6
NIH should explore alternative information dissemination models,
such as U.S. Department of Agriculture (USDA) extension services or
the approaches used by pharmaceutical companies in marketing their
products to physicians (detailing).

RECOMMENDATION 1.7
NIH should provide technical and financial assistance to enable
those who need this information to access it via the latest 
electronic information resources, such as the Internet. NIH should
expand use of the emerging National Research and Education Network
(NREN) for national and international collaboration and data
communications.

RECOMMENDATION 1.8
NIH should modify its HIV/AIDS-related grants/contracts procedures
to: (1) provide funding in research grants and contracts, when
appropriate, for a computer and access to NIH-supported databases
and other information resources; and (2) clarify the instructions
provided to potential grantees to indicate that information access
relevant to their research project may be supported. 

RECOMMENDATION 1.9 
NIH should provide clinical researchers with training opportunities
in the use of high performance computing systems to facilitate the
conduct of HIV/AIDS-related research and collaboration among
investigators.


PANEL 2: MEDICAL, DENTAL, AND NURSING PROVIDERS

The Challenge
This panel included representatives from the medical, dental, and
nursing professions; it also included members of the media and the
affected community groups. The initial focus was on the need for
the rapid dissemination of clinical research results to health care
providers so that they are adequately prepared to provide the best
care for their patients and to deal with questions from patients
and their families. The example case study used dealt with the
dissemination of the results of a drug trial comparing ddI and ddC
in patients who could not continue AZT therapy. These health care
providers addressed the issues of the type of information required
to care for their patients as well as the format that information
should take. The diversity of the health care provider community,
not only in type of provider, but also in setting of practice, has
a significant impact on the type of information needed, the format,
and the routes used to disseminate it. 

The Provider Community
Each segment of this community uses various preferred routes to
obtain their information. Traditionally, physicians rely heavily on
interactions with colleagues. Dentists also obtain much of the
medical information they need through colleague-to-colleague
interactions and at conferences and workshops. However, nurses do
not rely as heavily on interactions with their colleagues for
acquiring information. Their principal sources include continuing
education, specialty journals, and nurse educators. Nurses,
however, often lack access to needed HIV/AIDS information sources.

Approaches that take advantage of these already existing routes
should be supported. For example, the HIV Telephone Consultation
Service ("warmline"), a national service operated in the San
Francisco area by the Health Resources and Services Administration
(HRSA) AIDS Education and Training Center and supported in part by
NIH, was cited as a successful example of linking all of these
types of health care professionals with their peers. Through this
service, a health care professional can obtain information about an
HIV/AIDS-related problem by talking on the telephone with another
provider whose knowledge is supplemented by access to such
resources as AIDSLINE.  This type of personalized, one-on-one
service could assist all types of health care providers,
particularly those in rural or underserved areas who often lack
easy access to colleagues knowledgeable in HIV/AIDS. Similar
programs may be required to meet the needs of specific communities.

RECOMMENDATION 2.1
NIH should continue to support services that take advantage of the
preferred pathways by which practitioners receive information such
as practitioner-to-practitioner interactions, e.g., HRSA HIV
Telephone Consultation Service. The availability of these services
should be widely publicized and access broadened to include
minority and other health professionals practicing in rural,
inner-city, and other underserved settings. 

RECOMMENDATION 2.2
NIH should continue support of community, regional, national, and
international conferences and workshops to facilitate
colleague-to-colleague exchange of HIV/AIDS-related information.

Many medical, dental, and nursing care providers also express a
preference for integrated summaries of up-to-date information. They
have neither the time nor expertise to continually research the
literature, analyze it, and synthesize it into useful formats. The
AIDS Knowledge Base, developed and maintained at San Francisco
General Hospital, is an example of this type of resource tailored
for health care providers. However, producing and maintaining such
knowledge bases is expensive and requires substantial investments
of time by experts for collecting large quantities of information
and distilling extracts significant for practitioners. Electronic
technologies can be used to facilitate the creation of these
resources and in their dissemination.

RECOMMENDATION 2.3 
NIH should support the continued development of HIV/AIDS manuals
that summarize known information about treatment and are thus
useful in the direct provision of patient care. Electronic
technologies should be used to facilitate the creation,
maintenance, and access to such resources.

Generally, for physicians and dentists, the use of electronic
information sources depends less on costs or availability of
equipment than on (1) the knowledge of how to use such resources,
and (2) time constraints. For most of these professionals,
regularly searching online databases such as AIDSTRIALS or AIDSLINE
may not always be a realistic option. In teaching hospitals and
similar large institutions, librarians often are available to
provide the needed information. In smaller clinics and
community-based organizations, library services are rarely
available. Electronic information systems, to be more widely
applied, need to be extremely easy to use and should be designed
specifically to fit into the practice setting. 

RECOMMENDATION 2.4 
NIH should continue to develop and improve user-friendly electronic
information systems and services in HIV/AIDS for physicians,
dentists, and nurses and, provide readily available training and
affordable access to them.

Dentists and nurses are playing large roles in providing care in
this epidemic and, therefore, have a critical need for HIV/AIDS
information. A dentist is sometimes the first health care
practitioner to identify HIV/AIDS symptoms in a patient. As
mentioned, nurses often do not have access to the types of
information resources used by physicians and dentists. In
hospitals, physicians can be a source of information. However,
increasingly, nurses work in more isolated settings such as in
small clinics, schools, or in home care situations, where acquiring
needed information becomes particularly difficult. The 17 AIDS
Education and Training Centers (ETC's) supported by HRSA provide
education and training for health personnel to assist them in
providing diagnoses, primary care, and counseling as well as
information about prevention.

RECOMMENDATION 2.5 
NIH should work collaboratively with other Federal agencies and
professional societies to use existing programs and to develop new
programs to provide HIV/AIDS information to physicians, dentists,
nurses, and other health care workers.

RECOMMENDATION 2.6 
HIV/AIDS information should be tailored to be maximally useful in
specific care settings. Outreach programs should be developed to
promote the availability and use of these services.

Health care providers in isolated settings, such as those in rural
areas and on Native American reservations, find it especially
difficult to obtain up-to-date HIV/AIDS information. They lack
ready access to colleagues and institutions that could provide them
with such information.

RECOMMENDATION 2.7
NIH, working with other concerned agencies such as CDC, HRSA, and
the Indian Health Service, should initiate efforts to identify
underserved users such as rural health care providers and nurses
working outside of institutional settings, and make HIV/AIDS
information regarding treatment and prevention more widely
available to them. 

Rapid Dissemination of Clinical Trials Results
Information developed during HIV/AIDS clinical trials is of primary
importance for health care providers. Such information needs to be
released as quickly and as completely as possible after the
completion or termination of a trial. Several times in the past,
NIH has initially disseminated information about the results of an
AIDS-related clinical trial as a press release to the general
media. Some time after the press release, and after publication in
the news media, information was mailed to physicians known to be
treating HIV-positive patients. Physicians cannot treat or advise
their patients on the basis of a press release alone. An NIH press
release about the results of a clinical trial is most useful to the
medical community when quickly followed by explanatory information
to health care providers linking these results to clinical
practice. 

RECOMMENDATION 2.8
NIH should place a high priority on the prompt release and
dissemination of HIV/AIDS-related clinical trial results
information to physicians and other health care providers. Such
releases should be consistently followed by explanatory information
linking these results to clinical practice and providing sufficient
data for the practitioner to evaluate their applicability to
patient care.

Traditionally, the peer review function for medical information is
fulfilled through publication in medical journals. This process can
sometimes take more than a year, and may be much too slow for such
a rapidly moving field as HIV/AIDS. Press releases and other types
of releases without adequate evaluation (peer review) may not
benefit either health care providers or patients.

RECOMMENDATION 2.9
NIH should, when warranted, convene special panels of experts to
apply rapid peer review to HIV/AIDS clinical trial results
information about to be released to the health care provider
community and the public.

The Clinical Alert is a mechanism recently adopted by NIH in an
agreement with the editors of several leading biomedical
journals.(3) NIH makes use of this mechanism in urgent cases in
which timely and broad dissemination of results of clinical trials
could prevent morbidity and mortality, pending formal release of
the findings through conventional journal publication. With this
agreement, the Clinical Alert does not become a barrier to
subsequent publication of the full research paper. The decision to
issue a Clinical Alert is made by an NIH institute director,
following consultation with study investigators and review by the
data safety monitoring board. Both traditional and electronic
communications channels are used to disseminate the Clinical
Alertþin summary and full-text formþto health professionals, the
media, and the public. These channels currently include press
releases and press conferences, online distribution to all users of
NLM's MEDLARS online services, telefacsimiles to all medical school
libraries, and mailings to some 4,000 other health science
libraries throughout the country.

RECOMMENDATION 2.10
NIH should use the Clinical Alert mechanism for important HIV/AIDS
information as it does for other urgently needed 
information.

RECOMMENDATION 2.11
NIH should develop additional communications channels to ensure
that Clinical Alerts pertaining to urgently needed HIV/AIDS
information reach all potential users in all settings (e.g., other
clinical researchers, practitioners, and community-based
organizations).

RECOMMENDATION 2.12
NIH should review whether the communications channels effective for
Clinical Alerts should be used with all NIH-sponsored AIDS-related
clinical trials information.

Guidelines for Patient Management
It is clearly important to health care providers that clinical
trial results be linked quickly to their effects on clinical
practice. The Agency for Health Care Policy and Research (AHCPR) is
charged with developing clinical practice guidelines or "standards
of care" for a wide variety of subjects, including AIDS. However,
in a rapidly changing field such as HIV/AIDS, treatment standards
can become quickly outdated. New information is being developed
daily and there is great pressure to try to integrate every new
finding into the practice setting. Therefore, the speedy
development of new HIV/AIDS patient management guidelines, and the
rapid updating of existing guidelines is a majorþnow only partially
filledþneed of practitioners in this area. Notwithstanding the
mission of AHCPR to develop clinical practice guidelines, a
consensus of expert opinion such as that made available to
physicians and surgeons (and patients) through the National Cancer
Institute's Physician Data Query (PDQ) system could provide
practitioners with assistance in decision making while developing
a plan of action for each patient. Comprehensive yet concise
patient management guidelines would enable health care workers in
all settings to have the basic information needed to care for their
patients. Guidelines need to be written specifically for the
different segments of the health care provider
communityþphysicians, dentists, and nurses.

RECOMMENDATION 2.13 
In collaboration with other concerned agencies and the relevant
professional associations, NIH should provide leadership and
resources to promote the expeditious development and maintenance of
easily understood HIV/AIDS patient management guidelines. Such
guidelines should be disseminated in different formats appropriate
to the various segments of the health care provider community.
These formats could range from full-text online databases to
hard-copy publications and guideline compilations.


PANEL 3: ALLIED HEALTH CARE PROVIDERS

The Challenge
The allied health care provider panel included representatives from
the social work and mental health communities, an information
provider, a nutritionist, a physician, and a member of the affected
community. The major problems discussed included the need of
professionals working in straitened circumstances to access a wide
range of resources. Members of the allied health community often
have the most extensive contact with the patients and their
families and are called upon to provide an array of information
within a limited time frame and with few resources. This group is
also multidisciplinary and its needs are not as tightly defined as
those of some of the other communities. In the past, NIH has not
focused strongly on meeting the needs of this group.

Serving the Full Range of Health Needs
Initiating the discussion with a composite case study tracing one
social worker's attempts to find information that would help her
develop a comprehensive treatment plan for her client, the panel
focused on the importance of the multidisciplinary approach to
patient care involving an entire team. This included the
participation of social workers and case managers, with social
workers frequently serving as the links between patients and
physicians and as important sources of information for their
clients and the communities in which they work. The face-to-face
time that they spend with clients makes it possible for real
patient education and meaningful information transfer to take
place.

In addition to allied health professionals, who are traditionally
viewed as part of the health care team, the epidemic has brought to
the fore other professionals, paraprofessionals, and volunteers who
work closely with persons living with HIV/AIDS and people at high
risk for contracting HIV. These include the clergy, school health
technicians and counselors, teachers, physical and occupational
therapists, homeless shelter workers, herbalists, and folk healers,
among others. The number of ways that these individuals interact
with clients and community members and the settings in which these
interactions take place vary widely. Similarly, the span of
services provided by this group is very broad, encompassing
financial issues, transportation, access to treatment and child
care, drug abuse, bereavement, rehabilitation, etc. Because of
their important role, these people need easily accessible paths to
up-to-date, relevant information.

The settings in which allied health care providers work are as
varied as the professions and services they represent. Locations
include community clinics, private practices, social service
agencies, houses of worship, and private homes. Even the most basic
library services may not be available to these workers. Some
providers work in overburdened State and local health agencies
struggling with extremely heavy case loads. Their access to both
traditional and state-of-the-art information resources may be
extremely limited and they have little time, experience, or
training in using them, particularly in the case 
of electronic resources.

RECOMMENDATION 3.1
NIH should initiate outreach programs to connect unaffiliated
allied health care providers with medical libraries and other
NIH-supported resources that could provide access to the required
HIV/AIDS information. 

Diversity of Information Resources
There are gaps in the information available to allied health care
providers and their clients. They have difficulty obtaining
information that focuses on the use of therapies, such as Kemron,
that are important to minority communities; the pros and cons of
using various alternative therapies; and the interactions between
substance abuse and HIV disease, such as the effect of long-term
methadone use on antiretroviral drug efficacy.
 
RECOMMENDATION 3.2
NIH should expand its information services to make available
information about the evaluations of alternative and nontraditional
therapies for HIV/AIDS.

RECOMMENDATION 3.3
NIH should use the resources of the National Institute on Drug
Abuse and the National Institute on Alcoholism and Alcohol Abuse to
increase the availability of substance abuse research information
relevant to HIV/AIDS.

More information about HIV-related mental health issues is needed
as well, because of the key role that mental health plays in
maintaining a good quality of life among persons living with
HIV/AIDS. Other areas that are poorly covered by the existing
information resources include the role of spirituality and
information about rehabilitation. There is a strong feeling among
allied health care providers and their clients that patients should
make their own decisions about quality of life issues. However, to
do this effectively these patients need information. Because of the
close relationships that both traditional and nontraditional allied
health care providers develop with their clients, they are in a
good position to help make this type of information available to
these clients. Allied health care providers also require access to
information about prevention. They are in an excellent position to
communicate this information to their clients and to implement
prevention programs.

RECOMMENDATION 3.4
NIH should use all of its resources, particularly those of the most
recently added institutesþthe National Institute of Mental Health,
the National Institute on Drug Abuse, and the National Institute on
Alcoholism and Alcohol Abuseþto expand the scope of its information
resources and dissemination activities to include information about
HIV/AIDS-related psychosocial research. This should include mental
health issues as well as behavioral research as it relates to
prevention.

Allied health care providers face a number of barriers in accessing
many established sources of information.  Because of the breadth of
information required by this group, a large burden is placed on the
busy allied health care provider to determine what is available and
to learn the different ways to access or acquire the information.
Further, the information is generally highly technical, using the
terminology of the many fields represented. This may diminish the
ability of the allied health care worker to locate the needed
information quickly and in a usable format. 

RECOMMENDATION 3.5
NIH should work with other involved agencies to organize
information resources to make it easier for allied health care
providers to access information. NIH should explore the application
of þone-stop-shopping' models such as the National Cancer
Institute's Physician Data Query (PDQ) system to HIV/AIDS.

RECOMMENDATION 3.6
NIH should translate complex concepts and terminology into concise,
jargon-free summaries that are easily understood by allied health
care providers and the communities they serve.

RECOMMENDATION 3.7
NIH should provide training opportunities and technical support to
help allied health care providers gain access to and become
proficient in the use of electronic information systems.

Developing Linkages
Allied health care providers frequently communicate with each other
informally and through professional conferences. Newsletters are
also an important source of information for this group, providing
practical, concise discussion of important issues. Many allied
health care providers keep in close contact with the professional
organizations that represent them, and regularly receive a great
deal of information through vehicles designed by these groups for
this purpose. Others are unaffiliated with professional
organizations but can be reached with information through
community-based organizations (CBO's) or AIDS service organizations
(ASO's) in which they work. Churches and various ethnic
organizations also function as nontraditional, but important,
allied health care providers in this epidemic. All of these
existing networks have potential as dissemination routes for
up-to-date HIV-related information.

RECOMMENDATION 3.8
NIH should develop partnerships with professional organizations
representing allied health care providers to distribute information
through organizational journals, newsletters, conferences, and
continuing education programs.

RECOMMENDATION 3.9
NIH should develop partnerships with CBO's and ASO's to distribute
information to their affiliated allied health care providers using
the CBO/ASO newsletters, electronic bulletin boards, and other
suitable activities.

RECOMMENDATION 3.10
NIH should use existing networks of religious and ethnic
organizations as communication pathways to link these
nontraditional allied health care providers to the HIV/AIDS
information they need.

RECOMMENDATION 3.11
To make the HIV/AIDS information disseminated by community-based
organizations more accessible, NIH should support the development
of a finding tool, such as an electronic index, to the contents of
resources such as newsletters that are important sources of
information for allied health care providers.


PANEL 4: MEDIA AND THE GENERAL PUBLIC

The Challenge
This panel, chaired by nationally recognized members of the print
and broadcast media, was composed of representatives from major
national print media, the gay press, minority media, and
AIDS-specific media. Community members and AIDS information
specialists were also represented. The discussion concerned the
respective roles of scientists (the generators of new information),
journalists, and other members of the media (who report and
interpret new information for the public) and, to a lesser extent,
Federal public information officials (who sometimes serve as points
of information access for journalists). The responsibilities of
these groups to inform and educate the public often conflict. The
scientific community may not be adept at dealing with the media
who, in turn, may not be sufficiently knowledgeable about science. 

The Media
The term "media" in the context of this conference is loosely
defined as any person or organization that serves as a conduit of
HIV/AIDS information to the public. Included are reporters for
national, local, community, and specialized newspapers and
newsletters; writers for national news magazines; radio and
television reporters and anchors; and producers of media such as
electronic bulletin boards. Producers of low-budget, alternative
publications and bulletin boards may work relatively independently,
making their own decisions about what to write in a story. Large
national newspapers and magazines, however, exercise great
editorial control over what is published; stories receive strict
scrutiny from editors who determine the newsworthiness of the story
relative to what else is happening that day. Many small and
community newspapers have no reporters devoted to AIDS or even
health issues, and rely on the larger papers or newswire services
as their sources of stories.

RECOMMENDATION 4.1
NIH should make a determined effort to work with journalists and
the media at all levels as they are a most important mechanism for
reaching the public with important information about HIV/AIDS.

Educate or Inform?
Brief discussions of two recent high-profile cases involving
scientists and the media served as a starting point for the panel's
discussions. The first case used was the widely aired but highly
controversial claim by molecular biologist Peter Duesberg that HIV
is not the causative agent of AIDS. The second case described the
"mystery virus" story that broke just prior to the VIII
International Conference on AIDS in Amsterdam in 1992.

To what extent were reporters not serving the common good in giving
prominence and credence to theories that had little or no basis in
scientific fact? Since, as several conference attendees commented,
one of the primary functions of our free press is "to educate the
public," wasn't there an obligation on the part of reporters to
research their stories more completely and thus give a more
balanced view?

In fact, most journalists do not see their role primarily as one of
educating. Rather, they see themselves as simply reporting "news";
whether for education, information, or entertainment, would depend
on the nature of the item being reported, the newspaper (or other
medium) in which it is being published, and the expectation of the
audience. That being the case, it is crucial that institutions like
NIH be aggressive and proactive in providing the media with
reliable information and background on which to base news stories.
This would provide the balance and context that too often are
missing from current stories about AIDS.

RECOMMENDATION 4.2
NIH should aggressively rebut national media articles that contain
misinformation or misleading information.

RECOMMENDATION 4.3
NIH should encourage journalists to publish sidebar stories to
provide background and context for their main AIDS stories,
particularly when reporting something new or controversial. When
possible, NIH should provide the necessary information.

RECOMMENDATION 4.4
NIH should always include in press releases a telephone number
(e.g., an AIDS hotline) for readers to call for further information
on the topic. NIH should strongly encourage the media to include
the number in the story.

Issues of Access
A part of NIH's responsibility is to ensure that journalists have
access to knowledgeable and articulate scientists who can discuss
the newest claims and reports (regardless of where they originate)
with authority. In general, journalists enjoy different degrees of
access to scientists depending on their affiliation. Local
television reporters are sometimes viewed with fear and suspicion
by scientists, while public radio reporters are perceived more
favorably, and thus have more doors open to them. Related to the
need for access to scientists is the need for scientists to know
how to talk to the media. Journalists sometimes consider scientists
to be naive; scientists need to recognize that reporters may not
always report their views in a sympathetic way.

RECOMMENDATION 4.5
NIH should provide training for its scientists in media relations.

Some reporters feel that direct access to scientists is impeded
when, for example, an NIH institute requires that a Public
Information Officer serve as a reporter's conduit to an NIH
scientist. There is currently no NIH-wide practice in this regard.
[ed: Since the conference, a Task Force set up by the NIH Office of
Communications is currently looking at existing policies in the
various institutes to see if any changes are needed in how the
media gain access to NIH scientists.]

RECOMMENDATION 4.6
NIH should review and clarify its policies concerning whether
journalists may have direct access to scientists. This would
include clarifying NIH-wide policies as well as the policies of the
individual NIH components.

Reaching Minority Populations
The fascination of the public with both stories described in the
case study can be traced to the fact that it is very difficult to
educate people about complex issues like HIV/AIDS. "Strange sound
bites" carry orders of magnitude more impact than rational
information because they feed into people's fears, fantasies, and
insecurities. However, it must be recognized that often such
stories may have a tremendous negative impact on prevention efforts
because people will point to them to justify their behavior and
claim that difficult behavior changes are useless. These stories
fuel denial and seem to release people from their responsibility.
This is particularly critical in communities of color where there
is widespread distrust of the establishment. Community-based AIDS
service organizations, hotlines, and others are then left to deal
with people's fears, which are fed by these stories. 

Contrary to popular opinion, the gay media, which may cover
HIV/AIDS issues in more depth, does not reach the entire gay
population. Many participants agreed that mainstream media should
also cover HIV/AIDS issues in detail. Both the alternative and the
national media should constantly be aware that what they write and
broadcast is frequently picked up and reproduced by local media.

RECOMMENDATION 4.7
NIH should provide technical assistance through workshops or other
training vehicles to writers and editors. NIH should proactively
seek out media that serve minorities and small or rural communities
and the alternative media to provide this assistance.

RECOMMENDATION 4.8
NIH should have a single 800 telephone number for journalists
working at all levels, including those serving gay and minority
communities. NIH's radio news service should be expanded to include
more AIDS information.

Other Approaches to Disseminating HIV Information
The panel discussed other approaches to getting accurate, timely
information to the public without relying on the traditional print
and broadcast media to decide what is newsworthy and to interpret
scientific findings. The U.S. public library system is especially
well placed to provide this type of service. Libraries can serve as
a conduit of government-produced information to the public. This
could be particularly useful in small communities.

New technologies can also provide opportunities to communicate
directly with the public. Cable television, satellite
communications, computerized bulletin boards, information kiosks in
pharmacies, and many other mechanisms can play a part in the
overall effort to educate the U.S. public about HIV/AIDS.

RECOMMENDATION 4.9 
NIH should explore the use of different technologies and media that
can directly reach infected individuals; for example, videos in
waiting rooms, public access cable television, or minority media
such as Black Entertainment Television. The use of the Internet for
this purpose should also be explored. 

RECOMMENDATION 4.10 
NIH should work with library associations to develop an efficient
mechanism to proactively communicate HIV/AIDS information to
libraries and other community information delivery programs.



PANEL 5: PATIENTS AND THE AFFECTED COMMUNITY

The Challenge
This panel consisted of representatives from national and
community-based AIDS service organizations, including several
persons living with HIV, as well as an information provider. The
discussion centered on the need for information because of the
desire by this community to take charge of their own care and make
informed decisions. The difficulty of using existing information
resources because of the many barriers is a significant issue.
These barriers include high cost, lack of technological capability,
social problems, the technical nature of the available information,
and the apparent conflicts in the available information. HIV is
only one of many problems facing the affected community. Many of
its members are poor. Sometimes problems such as hunger and
homelessness must be dealt with before HIV can be addressed. Many
feel isolated from information and other resources; this is true
even for those living in metropolitan areas. Special burdens are
faced by women and ethnic, racial, and cultural minorities. 

An Expanding Community
Since the start of this epidemic over a decade ago, the population
infected with HIV has continued to increase in size and diversity.
While the initial communities affected were hemophiliacs and male
homosexuals, in more recent years the face of the disease has
changed. HIV and AIDS is taking an increasingly heavy toll on
communities of color, women, injection drug users, and the
incarcerated population. The incidence in adolescents is also
escalating. The information needs of these different groups is wide
and varied. Meeting these needs is extremely complex, and different
strategies may be needed for each target group.

The initial case study discussion focused on the specific needs of
HIV-positive women and the additional burdens placed upon them
because of the position of women in society. Because the
communities affected by the epidemic are changing so rapidly,
cultural sensitivity is crucial as the epidemic expands. Many of
these communities are rural or isolated in other ways. Successful
techniques for disseminating information to diverse communities are
being used here and abroad, and NIH may benefit by considering
those methods.  Individuals in different communities often get
their information from "nontraditional" sources. It is also
important to recognize that information is needed not only by the
infected individuals, but also by family and friends. In some of
these communities those who need HIV/AIDS information may not seek
it out in traditional settings such as departments of public health
or clinics. This is particularly true of information relating to
prevention.

RECOMMENDATION 5.1 
NIH should support efforts to make information accessible where
affected individuals are already spending time, e.g., relevant
medical clinics, social services or welfare offices. For example,
simple information about clinical trials should be available at
testing and counseling sites.

Like patients everywhere, many in the affected community rely on
their health care providers for treatment information. However,
some medical and allied health service professionals are not
familiar with HIV-related complications or do not spend sufficient
time explaining HIV issues to patients. Also, it is often difficult
for busy health care workers to keep up with the latest information
about AIDS. Furthermore, many health care providers, especially
physicians, are not knowledgeable about or sensitive to special
needs and burdens of many in the affected community. Getting more
HIV/AIDS information to health care providers will help them
deliver higher quality care and result in more information to
patients. Health educators and other types of allied health care
providers may be able to help get information from the medical care
providers to the patients.

RECOMMENDATION 5.2
NIH should facilitate access to HIV/AIDS information for health
care providers, especially those in high-incidence communities or
treating high numbers of HIV/AIDS patients, so that all those
treating patients with this disease are knowledgeable about it.

RECOMMENDATION 5.3
NIH should develop programs of technical assistance and other types
of support for health educators to use in working with patients and
their families.

Expanding Information Needs
Those with HIV disease and AIDS, their families, and the community
organizations supporting them have indicated the need for a wide
range of information to combat the disease. The level of
sophistication of these information users is highly variable, as
are their preferred sources of information, their methods of
accessing them, and the types of information desired.

As the epidemic has progressed, some large community-based
organizations (CBO's) have not yet made the same commitment to
providing information and services relevant to asymptomatic or
early HIV/AIDS infection compared to information and services
regarding HIV prevention and care for persons with AIDS. In
addition, these large CBO's, set up in the early stages of the
epidemic, may not be reaching communities which are now seeing the
large increases in infection. Especially in the communities more
recently affected by AIDS, many individuals are unfamiliar with the
basic information, e.g., the difference between HIV and AIDS, basic
prevention strategies, recommended prophylaxis, and treatment.
There is a continuing need for this information as new individuals
and communities become involved.

RECOMMENDATION 5.4
NIH should provide support and technical assistance to CBO's to
develop and make available to patients and their families
information and services relating to HIV/AIDS prevention,
treatment, and disease progression. 

HIV-infected people and their advocates want accurate information
about research results and treatment options as soon as possible.
The traditional, relatively slow, publication process for
peer-reviewed data causes some concern that those who want to know
about newly developed data quickly cannot obtain it. (See
discussion of Clinical Alerts by Panel 2 on page 10.)

RECOMMENDATION 5.5 
Whatever mechanisms NIH implements to improve the delivery of
clinical trial results to health care providers should include
delivery of this information to patients and the affected
community. This information should be delivered in appropriate
formats and languages to be useful to this community.

Clinical trials are complex and participation in them usually
requires a large commitment of time and effort for many
HIV-positive persons. For those who do participate, there needs to
be a sense of trust between patients and trial physicians.
Participants require feedback about their trial. Many in the
community seek any information available about the results of
clinical research, but most prefer that information to be
authoritative. Some are also especially interested in any report
about alternative therapies.

RECOMMENDATION 5.6
NIH should take the initiative in communicating the results of
clinical trials to trial participants.

RECOMMENDATION 5.7
NIH should collect and disseminate information about alternative
therapies, especially research and practical clinical 
information.
 
It is particularly evident that the psychosocial aspects of HIV
infection have a profound impact on persons with HIV. However,
information about psychological and behavioral issues is scarce. 

RECOMMENDATION 5.8 
NIH should include more mental health subject matter in its
HIV/AIDS information resources.
 
Reaching Out
There are many effective means available to reach patients and the
affected community with information they want in an appropriate
format. Information þgateways' (e.g., P.E.T.T., the Public
Education Technology Transfer project and other networks of
community-based organizations) currently exist that could assist
NIH in reaching patients and the affected community. These
organizations may be better able than NIH to reach some populations
at the community level, e.g., the poor, prisoners, and ethnic and
cultural minorities. Using these various avenues would enable NIH
to take advantage of the credibility these groups have within their
own communities, and would help to overcome the distrust that
certain communities have for the government.

RECOMMENDATION 5.9
NIH should assist community groups in getting information to their
constituencies. Support should include outreach and technical
assistance, especially in resource development and the capacity to
use information technology. NIH should develop and evaluate models
of information dissemination techniques, solicit feedback
('inreach'), and build trust.

Community groups, patients, and other members of the affected
community are using many techniques to communicate and share
information with their target populations. These include both
traditional and electronic approaches. Many community groups use
printed newsletters to reach their audiences. The quality of these
publications covers the spectrum from highly researched, technical,
and often complicated, to the basic. Although the information in
newsletters may be conflicting, leading to confusion on the part of
the reader, these newsletters augment the information available to
the community. In some cases, they may be the only source of
treatment information readily available. Many members of this
community find newsletters a good vehicle for obtaining their
information, yet, because of the cost, cannot always access them.
Health care providers also find newsletters to be useful tools to
disseminate important information. Few of these newsletters receive
financial or technical support from outside their organizations
even though they are educating thousands of people.

RECOMMENDATION 5.10
NIH should assist producers of newsletters by providing
information, technical assistance, and other resources. NIH should
also build on this relationship and use newsletters as one of the
vehicles for disseminating HIV/AIDS information to the community.

RECOMMENDATION 5.11
NIH should support the development of an online and printed index
to the articles in these newsletters to make specific information
more readily accessible to members of the community.

Electronic bulletin boards and networks are also valuable sources
of information with tremendous potential. For example, the
Sci.med.aids Internet news group has an extremely wide
distribution. However, this type of news group is only available to
those with connections to the Internet, and few community
organizations or individuals in the affected community have access
to the Internet. Electronic bulletin boards, often run on limited
budgets by volunteers and by community groups, are accessible to
anyone with a computer and modem. Bulletin boards have wide
accessibility, but although computerized services are useful to
some people, this is far from universally true. Cost, both for
access and the technology, and the lack of required skills are
barriers to using the full range of this technology. For example,
many in the affected community are interested in access to
abstracts from the International AIDS Conferences but cannot afford
the charges to use the AIDSLINE database where these abstracts are
available.
 
RECOMMENDATION 5.12
NIH should expand its AIDS information services available on the
Internet and also provide support for other groups working to do
this.

RECOMMENDATION 5.13
To facilitate access to electronic resources, NIH should provide
support, such as equipment, training, and technical assistance, to
organizations representing the affected community.

RECOMMENDATION 5.14
NIH should provide online access to the information in AIDSLINE,
AIDSTRIALS, and AIDSDRUGS at no cost to the community.

One of the major barriers to the use of HIV/AIDS information by
patients and the affected community is language and literacy. 
Furthermore the technical terminology used to describe complex
clinical research, treatment options, etc. can be difficult to
understand. 

RECOMMENDATION 5.15
Information should be consistently presented in nontechnical terms.
Appropriate formats and languages should be used to reach specific
audiences; for example, if people cannot read, games and videos may
be appropriate. NIH should help produce these materials and assist
the community in developing them. Other media and dissemination
vehicles should also be explored for those with low-literacy
skills.

One of the problems faced by those who are HIV-positive is the
social stigma that may be attached to them in their communities.
When this occurs, individuals are often reluctant to seek out
information and assistance from community-based or other
organizations. Libraries then become an important vehicle for AIDS
information dissemination. The effectiveness of libraries has been
shown in both urban and rural areas. However, public libraries are
often underfunded and lack knowledge of and access to the available
information resources. Individuals looking for HIV information want
to be able to find it easily on their own, without attracting
attention that might reveal their HIV status. Many libraries need
additional resources, funding, and technical expertise to make this
type of service available to their constituencies.

RECOMMENDATION 5.16
NIH should target public libraries and provide brochures, reports,
and electronic resources to them. 

Many in the community are unaware of the breadth and variety of
AIDS information resources available from NIH. The Guide to NIH
HIV/AIDS Information Services, distributed at the Conference, is a
good survey of those resources. The community could benefit from
this type of knowledge about NIH's services.

RECOMMENDATION 5.17
NIH should expand, update, maintain, and widely disseminate the
Guide to NIH HIV/AIDS Information Services.

Participants felt that the government's response to the need for
AIDS information is not coordinated and that there is too much
duplication.  For example, there is considerable overlap in the
populations targeted by NIH, the Centers for Disease Control and
Prevention (CDC), and HRSA. Each agency has its own set of services
and resources. People would prefer a central source for
information. There is also a lack of coordination among the
institutes at NIH. Several in the group requested that the
government coordinate its databases and provide a single, central
source for information.

RECOMMENDATION 5.18
NIH should work with HRSA, CDC, and other agencies to coordinate
HIV/AIDS information services. For example, outreach programs to
specific populations could be combined, and electronic resources
should be coordinated to reduce duplication.

***************

APPENDICES

APPENDIX A: GUIDE TO NIH HIV/AIDS INFORMATION SERVICES

The National Institutes of Health (NIH) supports research to
provide insight into the nature of HIV infection, the genetic and
biological properties of the virus, immunopathogenesis, the natural
history of HIV, consequences of HIV infection on the body, risk
factors, and various modes of transmission. NIH supports a major
effort to develop vaccines and to develop and test new agents for
the treatment of AIDS and HIV infection, including opportunistic
infections and HIV-associated malignancies.

NIH sponsors many information services to assist professionals,
patients, and the public in the quest for knowledge about HIV/AIDS.
This brochure describes many of those services, some of which are
components of other HIV/AIDS-related projects, as well as selected
information services sponsored by other agencies of the Public
Health Service. 

The symbols below identify the categories of HIV/AIDS information
services of each institute, office, or center.

R=   Research                 CT=  Clinical Trials
T=   Treatment                PE=  Patient Education
P=   Prevention               PT=  Professional Training 
GI=  General Information

The symbols below are used to identify the type or format of each
HIV/AIDS information service provided.

Tel= Telephone Service        Pub= Publication

Db=  Online Database or       Ex=  Exhibit, Educational 
       Electronic Bulletin         Campaign, or Training 
     Board                         Program/Materials


OFFICE OF AIDS RESEARCH (OAR) R, CT, T, GI

Pub       AIDS Program Advisory Committee: OAR distributes bound
          proceedings of the AIDS Program Advisory Committee (APAC)
          meetings to health professionals, media, constituency
          groups, and the public upon request.

Pub       AIDS Research Accomplishments: OAR publishes an annual
          report highlighting NIH HIV-related research advances of
          the previous year, written in relatively nontechnical
          language.

          For more information about resources and services
          provided by OAR, contact NIH, Office of AIDS Research,
          Building 31, Room 5Cþ06, Bethesda, MD 20892; (301)
          496þ0358.


NATIONAL LIBRARY OF MEDICINE (NLM) R, CT, T, P, GI

Db        AIDSLINE: This database contains over 90,000
          bibliographic references to published literature about
          HIV/AIDS and related issues including prevention and
          treatment. The database includes citations to journal
          articles, books, and audiovisual materials. AIDSLINE also
          contains the abstracts of the International Conferences
          on AIDS.

Db        AIDSTRIALS: This database contains information about
          HIV-related clinical trials, both open (currently
          accruing patients) and closed. Information about
          NIH-sponsored clinical trials is provided by the National
          Institute of Allergy and Infectious Diseases (NIAID);
          information about privately sponsored efficacy trials is
          provided by the Food and Drug Administration (FDA). 

Db        AIDSDRUGS: This database contains information about the
          agents being tested in trials included in AIDSTRIALS.

Db        DIRLINE: This database is an online directory of
          information resources covering all areas of biomedicine.
          Included are over 2,000 HIV/AIDS-specific resources such
          as organizations, self-help groups, and information
          systems.

          NLM's online databases are available to health
          professionals, libraries, and others. Users can access
          these databases using Grateful Med, a user-friendly
          software package available from the National Technical
          Information Service at 1þ(800) 423þ9255. For more
          information about NLM's databases, including AIDSLINE,
          and about obtaining access to them, call 1þ(800)
          638þ8480. 

          For more information specifically on the AIDSTRIALS and
          AIDSDRUGS databases, call (301) 496þ3147. Information
          from these two databases is also available through the
          toll-free AIDS Clinical Trials Information Service,
          cosponsored by NLM, at1þ(800) TRIALSþA (see page 4).

Pub       Clinical Alerts: Clinical Alerts are used by NIH in
          urgent cases in which timely and broad dissemination of
          results of clinical trials could prevent morbidity and
          mortality. These clinical trials results are released
          pending the formal release of the findings through
          conventional journal publication. Once the decision to
          issue a Clinical Alert is made by the director of the
          relevant NIH institute, both traditional and electronic
          communication channels are used to disseminate the
          Clinical Alert to health professionals, the media, and
          the public. These channels currently include press
          releases and press conferences, online through NLM's
          MEDLARS computer system, telefacsimile, and mailings.

Pub       AIDS Bibliography: NLM publishes the monthly AIDS
          Bibliography, which includes all citations from the
          AIDSLINE database. The AIDS Bibliography is available by
          yearly subscription from the Superintendent of Documents
          at (202) 783þ3238. For more information on the AIDS
          Bibliography (and general reference questions on AIDS
          resources), call (301) 496þ6095 or 1þ(800) 272þ4787.
          
          The monthly AIDS Bibliography, open trials from the
          AIDSTRIALS database, the entire AIDSDRUGS database, and
          AIDS-related Clinical Alerts are available via FTP from
          the NLM Publications Server. (FTP to nlmpubs.nlm.nih.gov
          and login: as nlmpubs.)


NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES (NIAID) R,
CT, T, PE

Tel, Pub  AIDS Clinical Trials Information Service (ACTIS): ACTIS,
          a toll-free telephone service, is a Public Health Service
          collaborative project provided by NIAID, NLM, the Food
          and Drug Administration, and the Centers for Disease
          Control and Prevention. It provides free, up-to-date
          information on clinical trials that evaluate experimental
          drugs and other therapies for adults and children with
          HIV infection and AIDS. Bilingual reference specialists
          are available to speak with Spanish-speaking callers. To
          speak with an ACTIS Reference Specialist, call 1þ(800)
          TRIALSþA (874þ2572); TDD: 1þ(800) 243þ7012.

Tel       NIH clinical trials information phone line: NIAID's
          Division of Intramural Research/Clinical Center operates
          a free telephone service for individuals seeking
          information about participating in clinical trials at
          NIH. Call 1þ(800) AIDSþNIH.

Pub       NIAID research and treatment updates: NIAID's Office of
          Communications distributes pamphlets, factsheets, press
          releases, a newsletter, and other print and audiovisual
          materials about HIV/AIDS clinical trials. NIAID
          disseminates research results relevant to clinical
          practice through press releases, Notes to Physicians, and
          Clinical Alerts.

Pub       NIAID reports: NIAID's Office of Communications
          disseminates materials resulting from NIAID-sponsored
          meetings. The Office of Communications also produces
          materials describing NIAID's current research
          initiatives, such as information about HIV vaccine
          development, preclinical drug development, pathogenesis
          research, and epidemiologic studies.

Pub       NIAID pamphlets and factsheets: NIAID's Office of
          Communications has developed a number of materials
          addressing HIV-related clinical trials and treatment
          issues for clinicians to use with their HIV-infected
          patients. 
          
          For more information, or to receive a free list of
          available materials, write to the National Institute of
          Allergy and Infectious Diseases, Office of
          Communications, Building 31, Room 7Aþ50, 9000 Rockville
          Pike, Bethesda, MD 20892. Many of these materials are
          also available by calling the AIDS Clinical Trials
          Information Service at 1þ(800) TRIALSþA (see page 4).


NATIONAL INSTITUTE ON AGING (NIA) GI

Pub       AIDS and the Older Adult: NIA produces this document, one
          in a series of "Age Pages," that provides general
          information to the public on AIDS in the older population
          and lists resources to contact for more information. For
          a copy, call 1þ(800) 222þ2225, or write the National
          Institute on Aging, Building 31, Room 5Cþ27, Bethesda, MD
          20892.


NATIONAL INSTITUTE ON ALCOHOL ABUSE AND  ALCOHOLISM (NIAAA) T, P

Pub       Alcohol and AIDS: This issue of NIAAA's quarterly
          bulletin "Alcohol Alerts" provides information to health
          professionals about the relationship between alcohol
          consumption and HIV infection and AIDS. It focuses on the
          relationship of alcohol consumption to unsafe sexual
          behavior and on the treatment implications of alcohol's
          effect on the immune system. Copies are available free
          from the National Institute on Alcohol Abuse and
          Alcoholism, 5600 Fishers Lane, Room 16Cþ14, Rockville, MD
          20857; (301) 443þ3860.

Pub       Alcohol, Health & Research World: Two issues of this
          peer-reviewed journal featured information about the
          relationship between alcohol consumption and HIV
          infection and AIDS: "Alcohol, Infectious Diseases, and
          Immunity" ($19.50, PB93160604) and "Prevention of Alcohol
          Related Problems" ($19.50, PB94113503). These issues are
          available for a fee from the National Technical
          Information Service (NTIS). Call NTIS at (703) 487þ4650
          for more information.


NATIONAL CANCER INSTITUTE (NCI) R, CT, T, PE

Tel       Cancer Information Service: NCI provides a toll-free
          telephone service for access to information specialists
          who can provide information about therapies for
          AIDS-related malignancies and answer questions from
          physicians, other health care providers, service
          providers, and the public. Call 1þ(800) 4þCANCER
          (422þ6237).

Db        Physician Data Query (PDQ): In cooperation with the
          National Library of Medicine (NLM), NCI provides an
          online system for professionals and nonprofessionals
          containing state-of-the-art treatment information about
          AIDS-related malignancies and other cancers. A
          bibliographic database, CANCERLIT, is also available. For
          more information, call 1þ(800) 4þCANCER (422þ6237) or NLM
          (see page 2) at 1þ(800) 638þ8480.
     
          CancerFAX: Health professionals with access to a computer
          with a fax modem can receive summaries directly from the
          PDQ database (see above). Summaries are available in both
          English and Spanish. The fax number is (301) 402þ5874.


NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT (NICHD) 
R, T, P

Pub       Final Report: Secretary's Work Group on Pediatric HIV
          Infection and Disease: NICHD produced this report
          containing the findings and recommendations of a
          workgroup convened to delineate the problems faced in
          confronting pediatric HIV infection and to suggest
          strategies for their solution. Other publications are
          being developed with information on maternal and
          pediatric AIDS.

Pub       The New Face of AIDS. A Maternal and Pediatric Epidemic:
          NICHD wrote and produced this brochure, which includes
          general information on maternal and pediatric AIDS. Among
          the areas discussed are routes of transmission, symptoms,
          prevention, and treatment.

Pub       AIDS Research at the National Institute of Child Health
          and Human Development: This document lists all current
          HIV/AIDS-related research projects supported by NICHD. It
          includes project descriptions, principal investigators,
          and Institute funding information.

          To obtain a copy of any of these NICHD documents, write
          to the National Institute of Child Health and Human
          Development, Office of Research Reporting, Building 31,
          Room 2Aþ32, Bethesda, MD 20892.


NATIONAL INSTITUTE FOR DENTAL RESEARCH (NIDR) R, PT, P

Pub       A Guide for Epidemiologic Studies of Oral Manifestations
          of HIV Infections: NIDR, in collaboration with the World
          Health Organization, has produced this document, which
          provides practical information for the design,
          implementation, and reporting of epidemiological studies.

Ex        Training manuals: Two training manuals will be available
          in the near future: Building the Capacity for an Oral
          Health Response to the Global HIV EpidemicþPrinciples for
          Developing a Country-Specific Approach, for all national
          dental coordinators of HIV/AIDS activities, and
          Mobilizing Oral Health Personnel to Respond to the
          Development of Country-Specific Plans, for local,
          regional, and national oral health personnel. The manuals
          explain steps for preventing HIV transmission in the
          dental setting.

          For more information, write to the National Institute for
          Dental Research, Building 31, Room 2Cþ35, Bethesda, MD
          20892.


NATIONAL INSTITUTE ON DRUG ABUSE (NIDA) T, PE, P, GI

Tel       NIDA/CSAT Drug Abuse Treatment Information and Referral
          Hotline: NIDA's Office of Science Policy Education and
          Legislation, jointly with the Substance Abuse and Mental
          Health Services Administration (SAMHSA), Center for
          Substance Abuse Treatment, sponsors a hotline to provide
          information to the public about the relationship between
          drug abuse and AIDS, including the risks associated with
          injection drug use, impaired judgment, and unprotected
          sex. To contact the hotline, call 1þ(800) 662þHELP, or
          1þ(800) 66þAYUDA (Spanish).

Ex        National Media Campaign on Drug Abuse and AIDS: NIDA
          conducts a campaign to make the general public aware that
          alcohol or other drug abuse could lead to exposure to
          HIV. Focusing on teenagers, young adults, and women, the
          campaign includes television and radio public service
          announcements, advertisements in newspapers and consumer
          magazines, posters, and pamphlets. Innovative
          communication channels such as movies are also used.
          
          For more information about NIDA's resources and services,
          write to the National Institute on Drug Abuse, 5600
          Fishers Lane, Room 10Aþ39, Rockville, MD 20857.


NATIONAL EYE INSTITUTE (NEI) CT, T

Pub       Studies of the Ocular Complications of AIDS: NEI
          disseminated the results of the Foscarnet-Ganciclovir
          Retinitis Trial by distributing a Clinical Alert, press
          release, and media kit. Results of other trials will be
          disseminated as appropriate. General information is
          available on the ocular complications of AIDS and on
          clinical trials completed and underway. For more
          information, contact the National Eye Institute,
          Scientific Reporting Section, Building 31, Room 6Aþ32,
          Bethesda, MD 20892; (301) 496þ5248.


NATIONAL INSTITUTE OF GENERAL MEDICAL SCIENCES (NIGMS) R

Pub       AIDS Targeted Drug-Design Project: Every June, NIGMS
          sponsors a national meeting of groups active in targeted
          drug design against AIDS. Abstracts are widely
          disseminated to interested parties. For more information,
          contact the National Institute of General Medical
          Sciences, Westwood Building, Room 922, Bethesda, MD
          20892; (301) 594þ7735.


NATIONAL HEART, LUNG, AND BLOOD INSTITUTE (NHLBI) R, PE, P, GI, PT

Ex        NBREP Public Education: NHLBI's Office of Prevention,
          Education, and Control sponsors the National Blood
          Resource Education Program (NBREP), which educates the
          public about the blood collection and donor screening
          process to ensure the safety of the Nation's blood
          supply, including the prevention of transfusion-related
          HIV transmission, and to encourage donations by
          autologous and other eligible donors. NBREP conducts mass
          media campaigns, including radio and magazine public
          service announcements, and distributes patient education
          materials.

Ex, Pub   NBREP Professional Education: NBREP educates physicians
          to be knowledgeable about the appropriate use of blood
          and blood products to ensure the safety of the Nation's
          blood supply. The program distributes the following
          professional education reports: Indications for the Use
          of RBC's, Platelets, and FFP; Indications for the Use of
          Autologous Blood; and Transfusion Therapy Guidelines for
          Nurses. 
          
          NHLBI also issues a yearly report on its AIDS-related
          research and other achievements. For more information
          about NHLBI HIV/AIDS-related services, write to the
          National Heart, Lung, and Blood Institute, Building 31,
          Room 4Aþ05, Bethesda, MD 20892; (301) 496þ0554.


NATIONAL INSTITUTE OF MENTAL HEALTH (NIMH) R, P

Pub       AIDS Research: An NIMH Blueprint for the Second Decade:
          This report provides a brief overview of NIMH's role in
          AIDS research, including major initiatives in the areas
          of behavior change and prevention, neurobehavior, and
          neuroscience.  Each section includes a discussion of
          issues, research opportunities, and questions.  To obtain
          a copy of the report, write to the National Institute of
          Mental Health, Information Resources and Inquiries
          Branch, Room 7Cþ02, 5600 Fishers Lane, Rockville, MD
          20857.


NATIONAL CENTER FOR RESEARCH RESOURCES (NCRR) R, GI

Pub       Annual RCMI International AIDS Symposium: NCRR provides
          this forum for Research Centers and Minority Institutions
          (RCMI) to stimulate discussion and ideas that will lead
          to collaborative research on AIDS. Proceedings are
          produced after each symposium in the series. 

Pub       NCRR Office of Science and Health Reports: NCRR's Office
          of Science and Health Reports produces several
          publications describing recent NCRR accomplishments,
          resources, and services, including: Program Highlights,
          an annual report; Research Resources Reporter, a
          bimonthly periodical; and directories. AIDS research is
          one of many biomedical research topics covered in these
          documents.

Ex        AIDS Animal Model Program: NCRR's Office of Science and
          Health Reports provides information for the public about
          the AIDS Animal Model Program and alerts qualified
          researchers to AIDS animal models. NCRR also supplies
          table-top exhibits used to promote the spf-rhesus and
          chimpanzee AIDS animal model programs. 

Ex        National Traveling AIDS Exhibit and Education Program:
          NCRR coordinates a hands-on exhibit and associated
          educational materials to improve public understanding of
          the fundamentals of microbiology underlying the AIDS
          epidemic. The target audiences are students in grades
          6þ12 and their families and teachers. Additional small
          modules on Understanding AIDS and a CD-ROM version are
          being prepared for use by schools, public libraries, and
          other institutions.

          For more information about resources and services
          provided by NCRR, contact the National Center for
          Research Resources, Office of Science and Health Reports,
          Westwood Building, Room 10Aþ15, 5333 Westbard Avenue,
          Bethesda, MD 20892.


FOGARTY INTERNATIONAL CENTER, R, T, CT, P, PT

Ex        AIDS International Training and Research Program: The
          Fogarty International Center sponsors training for
          foreign scientists to increase their capacity to deal
          with the AIDS epidemic through epidemiological research,
          clinical trials, and other prevention projects, and to
          stimulate cooperation and sharing of research knowledge.
          For more information, write to the Fogarty International
          Center, National Institutes of Health, Building 31, Room
          B2þC32, Bethesda, MD 20892.


SELECTED PUBLIC HEALTH SERVICE HIV/AIDS INFORMATION ACTIVITIES:


OFFICE OF NATIONAL AIDS POLICY (ONAP), EXECUTIVE OFFICE OF THE
PRESIDENT, R, T, P, GI

ONAP serves as the staff office responsible for coordinating and
integrating all Federal AIDS-related activities, including the
development of policy and the setting of priorities.

Db        OASH BBS: The OASH BBS is the free and publicly
          accessible electronic bulletin board of the White House
          ONAP and the U.S. Public Health Service (PHS), Office of
          the Assistant Secretary for Health (OASH). The White
          House section of the BBS allows for public input on
          HIV/AIDS-related issues under consideration. The OASH
          section distributes many files of AIDS-related
          information from PHS, including NLM's AIDS Bibliography,
          news releases from NIAID, Federal Register announcements,
          CDC's AIDS Daily Summary, and AIDS-related press releases
          and reports. For more information, contact ONAP, Hubert
          Humphrey Building, Room 738þG, 200 Independence Avenue,
          SW, Washington, DC 20201; (202) 690þ6248. To connect
          online to OASH BBS, dial (202) 690þ5423 using a computer
          and a modem.


AGENCY FOR HEALTH CARE POLICY AND RESEARCH (AHCPR) R, T

AHCPR supports activities designed to enhance the quality,
appropriateness, and effectiveness of health care services and to
improve access to that care through various programs, including its
AIDS Medical Care Effectiveness Program. The program emphasizes
three activities: clinical guidelines development and
dissemination, data development, and outcomes research.

Pub       AHCPR reports: AHCPR has produced several reports related
          to HIV/AIDS, including Pediatric AIDS-Related Discharges
          in a Sample of U.S. Hospitals: Demographics, Diagnoses,
          and Resource Use and Forecasts of the Costs of Medical
          Care for Persons With HIV: 1992þ1995. AHCPR is
          responsible for the development of guidelines for the
          treatment of HIV-infected individuals. For more
          information write to the Agency for Health Care Policy
          and Research, Executive Office Center, Suite 501, 2101
          East Jefferson Street, Rockville, MD 20852.


CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) R, PE, PT, GI, P,

CDC assesses the status and characteristics of the AIDS epidemic
and the prevalence of HIV infection, and supports, via financial
and technical assistance, the design, implementation, and
evaluation of HIV prevention and education activities. The CDC is
a co-sponsor of the AIDS Clinical Trials Information Service (see
page 4). 

Tel, Db,  CDC National AIDS Clearinghouse: The CDC National AIDS
Pub       Clearinghouse is a comprehensive HIV/AIDS information
          service targeted to health professionals, managers of
          HIV/AIDS programs, educators, and information providers.
          The Clearinghouse helps professionals access
          HIV/AIDS-related information through its online
          databases; obtain key HIV materials, such as the HIV/AIDS
          Surveillance Report, and articles from the Morbidity and
          Mortality Weekly Report; and share the latest HIV
          information through CDC NAC ONLINE, an electronic
          bulletin board service for AIDS-related organizations.
          The Clearinghouse's services are available Monday through
          Friday, 9 a.m. to 7 p.m. eastern time, by calling 1þ(800)
          458þ5231; or 1þ(800) 243þ7012 (TDD). 

Tel, Pub  CDC National AIDS Hotline: The CDC National AIDS Hotline
          is a toll-free HIV/AIDS-related information service that
          provides confidential information, referrals, and
          educational materials to the public. The Hotline operates
          24 hours a day, 7 days a week. Call 1þ(800) 342þAIDS;
          1þ(800) 344þSIDA (Spanish); or 1þ(800) 243þ7889 (TDD).

Tel       CDC automated telephone services: For current statistics
          on HIV infection and AIDS, call the CDC HIV/AIDS
          Statistics Information Line at (404) 332þ4570. CDC's
          Voice Information System also provides up-to-date
          information on a variety of health-related topics,
          including HIV/AIDS; call (404) 332þ4555. To receive free
          facsimile documents on a variety of HIV/AIDS-related
          topics, call the CDC Fax Information Service at (404)
          332þ4565.


FOOD AND DRUG ADMINISTRATION (FDA) CT, T, GI

FDA is responsible for assuring the safety and effectiveness of
drugs, biologics, vaccines, and medical devices used in the
diagnosis, treatment, and prevention of HIV infection, AIDS, and
AIDS-associated opportunistic infections. FDA also works with the
blood banking industry to help ensure the safety of the Nation's
blood supply. The agency is a cosponsor of the AIDS Clinical Trials
Information Service (see page 4). For more information, contact the
FDA Office of AIDS Coordination (HFþ12), 5600 Fishers Lane, Room
12Aþ40, Rockville, MD 20857; (301) 443þ0104.

Db        FDA Electronic Bulletin Board: FDA operates a publicly
          accessible electronic bulletin board. Included are press
          releases related to AIDS, such as those announcing new
          drug approvals. For more information, contact the FDA
          Press Office, 5600 Fishers Lane, Rockville, MD 20857. To
          connect online to FDA BBS, dial 1þ(800) 222þ0185 using a
          computer and a modem. The bulletin board is also
          accessible through the Internet: fdabbs.fda.gov.


HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA) CT, T, PE, PT

HRSA administers education and training programs for health care
providers and community service workers who care for AIDS patients.
HRSA also administers programs to demonstrate how communities can
organize their health care resources to develop an integrated,
comprehensive system of care for those with AIDS and HIV infection.

Tel       National HIV Telephone Consulting Service: HRSA funds the
          toll-free National HIV Telephone Consulting Service to
          provide information on drugs, clinical trials, and the
          latest treatment methods to physicians and other health
          care professionals who have questions about providing
          care to people with HIV infection or AIDS. All staff
          members are health professionals with extensive
          experience in outpatient and inpatient primary care of
          people with HIV-related diseases. The service, accessible
          from 10:30 a.m. to 8 p.m. eastern time, can be reached by
          calling 1þ(800) 933þ3413.

Tel       HIV Clinical Conference Call Series: In collaboration
          with the National Institute of Allergy and Infectious
          Diseases (NIAID), HRSA offers interactive, toll-free
          audio teleconferences during which primary health care
          providers from many disciplines have the opportunity to
          discuss timely clinical issues with internationally
          renowned clinical experts. For more information, contact
          Abe Macher, M.D., Health Services and Resources
          Administration, 5600 Fishers Lane, Rockville, MD 20852;
          (301) 443þ6364.

Ex        AIDS Education and Training Centers: HRSA supports a
          network of 17 regional centers that serve as resources
          for educating health professionals in prevention,
          diagnosis, and care of HIV-infected patients. The centers
          train primary care providers to incorporate HIV
          prevention strategies into their clinical priorities,
          along with diagnosis, counseling, and care of
          HIV-infected persons and their families. For more
          information, contact the AIDS ETC Program, Health
          Resources and Services Administration, 5600 Fishers Lane,
          Room 4Cþ03, Rockville, MD 20857; (301) 443þ6364.

Ex        National Pediatric HIV Resource Center: The Bureau of
          Maternal and Child Health, HRSA, supports the National
          Pediatric HIV Resource Center, which offers a range of
          services to professionals caring for children, youth, and
          families affected by HIV infection. The Resource Center
          provides consultation, technical assistance, policy
          analysis, and clinical training. The center is accessible
          from 9 a.m. to 5 p.m. eastern time and can be reached by
          calling 1þ(800) 362þ0071, fax: (201) 485þ2752, or by
          writing to the National Pediatric HIV Resource Center, 15
          South Ninth Street, Newark, NJ 07107. 

Pub       Clinical Issues Subcommittee: The Clinical Issues
          Subcommittee of the HRSA AIDS Advisory Committee was set
          up to facilitate timely dissemination of information
          about new developments in clinical research, drug
          development, and policies on HIV disease into language
          relevant for practicing caregivers, principally those
          supported by HRSA's HIV/AIDS-related programs. NIAID and
          the NIH Office of AIDS Research have participated in all
          its activities. For information, contact Pearl Katz,
          Ph.D., AIDS Program Office, Health Resources and Services
          Administration, 5600 Fishers Lane, Rockville, MD 20857;
          (301) 443þ4588.


SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION (SAMHSA)
R, P, GI, PE

Drug abuse treatment is a primary HIV prevention strategy. SAMHSA
administers the Alcohol, Drug Abuse, and Mental Health Services
Block Grant and other grant programs providing States and
localities with support for substance abuse and mental illness
treatment and prevention programs.

Tel, Pub  National Clearinghouse for Alcohol and Drug Information:
          SAMHSA's Center for Substance Abuse Prevention sponsors
          the National Clearinghouse for Alcohol and Drug
          Information (NCADI), which provides current print and
          audiovisual materials about alcohol and other drugs,
          including materials explaining the risk of HIV
          transmission from sharing needles during injection drug
          use and from unsafe behaviors practiced due to the
          effects of substance abuse. NCADI's resources include
          scientific findings; databases on prevention programs and
          materials, field experts, Federal grants, and market
          research; and information about organizations and groups
          concerned with alcohol and other drug problems. For more
          information, call NCADI at 1þ(800) 729þ6686, or 1þ(800)
          487þ4889 (TDD).

***************

INDEX TO THE GUIDE TO NIH HIV/AIDS INFORMATION SERVICES

A
"AIDS and the Older Adult," 28
"AIDS Bibliography," 27
AIDS Clinical Trials Information Service, 26, 27, 28
"AIDS Daily Summary," 33
AIDS Education and Training Centers, 36
AIDS Medical Care Effectiveness Program, 34
"AIDS Research: An NIMH Blueprint for the Second Decade," 32
AIDS Research at the National Institute of Child Health and Human
    Development, 29
AIDSDRUGS database, 26, 27
AIDSLINE bibliographic database, 26
AIDSTRIALS database, 26, 27
Alcohol, 28, 36
    and sexual behavior, 28
    and the immune system, 28
"Alcohol and AIDS," 28
"Alcohol, Infectious Diseases, and Immunity," 28
Animal models of AIDS, 32

B
Behavior, 28, 32
Bibliographic databases, 26, 27, 29, 33, 36
Bibliographies, 27
Blood donation, 31
Blood supply, 31, 35

C
Cancer Information Service, 29
CancerFAX, 29
CANCERLIT bibliographic database, 29
CDC National AIDS Clearinghouse, 34
CDC National AIDS Hotline, 34
Children, 29, 36
Clearinghouse, AIDS, 34
"Clinical Alerts," 27
Clinical guidelines, 34
Clinical Issues Subcommittee, 36
Clinical trials, 26, 27, 31, 33, 35
Counseling, 36

D
Diagnosis, 35
Directories, 26
    online, 26
DIRLINE database, 26
Drug abuse, 30, 36
    and sexual behavior, 30
Drugs, therapeutic, 31
    development, 26, 27, 31, 35, 36
    safety, 35

E
Education, public, 26, 28, 29, 30, 31, 32, 34, 36
Elderly, 28
Electronic bulletin boards, 33, 34, 35
Epidemiology, 27, 30, 34
Exhibits, 32
Eyes, 31

F
Families, 36
Federal AIDS policy, 33
"Forecasts of the Costs of Medical Care for Persons 
    With HIV: 1992þ1995", 34

G
"Grateful Med" software, 26
"A Guide for Epidemiologic Studies of Oral 
    Manifestations of HIV Infections," 30

H
Health care services, 29, 34, 35
HIV Clinical Conference Call Series, 36
"HIV/AIDS Surveillance Report," 34

I
International Conference on AIDS, 26

M
Malignancies, AIDS-related, 29
Mass media campaigns, 30, 31
Maternal HIV infection, 29
Medical devices, 35
Meeting proceedings, 26, 27, 31, 32
Microbiology of AIDS, 32
Minority research institutions, 32

N
National Clearinghouse for Alcohol and Drug Information, 36
National HIV Telephone Consulting Service, 35
National Pediatric HIV Resource Center, 36
Neuroscience, 32
"The New Face of AIDS," 29
"Notes to Physicians," 27

O
Ocular complications of AIDS, 31
Older adults, 28
Oral health, 30
Oral manifestations of HIV infections, 30

P
PDQ database, 29
"Pediatric AIDS-Related Discharges in a Sample of U.S. 
    Hospitals," 34
Pediatric HIV infection, 29, 36
Physician Data Query 
    see PDQ database
Prevention, 28, 29, 30, 31, 32, 33, 34, 35, 36
"Prevention of Alcohol Related Problems," 28

R
Reference services, 27, 29, 34, 36
Referral services, 27, 29, 30, 33, 34
Research
    ongoing, 26, 27, 28, 29, 30, 32, 33, 34
    opportunities, 32
    results, 26, 27, 29, 31, 32

S
"Secretary's Work Group on Pediatric HIV         
    Infection and Disease," 29
Self-help groups directories, 26, 34
Sexual behavior, 28, 30
Spanish language services, 27, 29, 30, 34
Statistical data, 34, 35
Symptoms, 29

T
TDD services, 27, 34, 36
Teenagers, 30, 32
Telephone consultation
  for patients, 27, 29, 34
  for professionals, 27, 29, 34, 36
Telephone hotlines, 30, 34
Training
  for foreign scientists, 33
  for health care providers, 30, 35, 36
  for oral health personnel, 30
Transfusion-related HIV transmission, 31
Transmission, 29, 31

U
"Understanding AIDS," 32

V
Vaccines, 27, 35

W
Women, 29, 30

Y
Young adults, 30, 36

***************

APPENDIX B: LIST OF EXHIBITORS

AIDS Clinical Trials Information Service (ACTIS)
P.O. Box 6421
Rockville, MD  20849þ6003

AIDS Education and General Information System (AEGIS)
P.O. Box 184
San Juan Capistrano, CA  92693

American Foundation for AIDS Research (AmFAR)
Treatment Information Services
733 Third Avenue, 12th Floor
New York, NY  10017þ3204

Centers for Disease Control and Prevention
CDC National AIDS Clearinghouse
P.O. Box 6003
Rockville, MD  20849þ6003

Computerized AIDS Information Network (CAIN)
1625 North Hudson Avenue, Suite 105
Los Angeles, CA  90028

Friends of the National Library of Medicine
1555 Connecticut Avenue, NW, Suite 200
Washington, DC   20036

Health Resources and Services Administration
Office of Communications
Bureau of Health Resources Development
Parklawn Building, Room 9Aþ33
5600 Fishers Lane
Rockville, MD  20857

Home Nutrition Services
HIV-NET BBS
6500 Fannin, Suite 1001
Houston, TX  77030

National Association of People With AIDS
1413 K Street, NW, 10th Floor
Washington, DC   20005

National Institute of Allergy and Infectious Diseases
National Institutes of Health
Office of Communications
Building 31, Room 7A50
9000 Rockville Pike
Bethesda, MD  20892

National Institute on Drug Abuse
National Institutes of Health
Parklawn Building, Room 10A39
5600 Fishers Lane
Rockville, MD  20857

National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD  20894

Office of the Assistant Secretary for Health
National AIDS Program Office
Hubert H. Humphrey Building, Room 738G
200 Independence Avenue, SW
Washington, DC  20201

Veterans Health Services and Research Administration
Educational Programs Division
Office of Academic Affairs, Room 145C
Department of Veterans Affairs
810 Vermont Avenue, NW
Washington, DC  20420

***************

APPENDIX C: CONFERENCE AGENDA


NIH HIV/AIDS Information Services Conference
June 28þ30, 1993
National Library of Medicine

Lister Hill Center Auditorium
Bethesda, MD


MONDAY, JUNE 28

2:00 p.m.     
Opening Remarks--Elliot R. Siegel, Ph.D., Chair, Planning Committee

Welcome--Donald A. B. Lindberg, M.D., Director, National Library of
Medicine

Opening Address--Anthony S. Fauci, M.D., Director, National
Institute Of Allergy and Infectious Diseases

3:00 p.m. 
Break

3:15 p.m.
Keynote Address--June Osborn, M.D., Chair, National Commission on
AIDS

Report on NIAID/HRSA Information Dissemination Workshop--Debra
Fraser-Howze, Executive Director, Black Leadership Commission on
AIDS

5:00 p.m.
Reception--Friends of the National Library of Medicine

*Exhibits on HIV/AIDS Information Resources will be available
during sessions and reception.


TUESDAY, JUNE 29

8:30 a.m.
Opening Remarks and Charge to Panels--Elliot R. Siegel, Ph.D., 
National Library of Medicine

Case studies of experiences in obtaining and using NIH HIV/AIDS
information services by various user communities, each followed
by a panel discussion on effectiveness and needs for change.
Panels will consider:

    * Content: Subject coverage of NIH HIV/AIDS information
      products and services, including adequacy of coverage,
      gaps, issues of quality and review.
    * Information Dissemination: Use and appropriateness of
      technologies for the creation and dissemination of
      HIV/AIDS information.
    * Access to Information: Reaching the intended audience,
      barriers to use of NIH HIV/AIDS information products and
      services.

8:40 a.m.
Overview of NIH HIV/AIDS Information Services--Jack Whitescarver,
Ph.D., Linda Reck, Office of AIDS Research, NIH

9:00 a.m.   
Panel 1: 
HIV/AIDS Information for Clinical Researchers
Co-Chairs: Charles Carpenter, M.D., Brown University; Lynn Besch,
M.D., Tulane University    

10:00 a.m.
Break

10:15 a.m.
Panel 2: 
HIV/AIDS Information for Medical, Dental, and Nursing Providers
Co-Chairs: P. T. Cohen, M.D., San Francisco General Hospital;
Neil Schram, M.D., American Association of Physicians for Human
Rights
 
11:15 a.m.
Panel 3: 
HIV/AIDS Information for Allied Health Services Providers
Co-Chairs: Caitlin Ryan, M.S.W., Chief, Office of AIDS
Administration, Washington, DC, Department of Health and Human
Services; Cornell Scott, Hill Health Center, New Haven, CT

12:15 p.m.
Lunch

1:45 p.m.
Panel 4: 
HIV/AIDS Information for the Media and the General Public
Co-Chairs: Joanne Silberner, National Public Radio; Philip Hilts,
New York Times

2:45 p.m.
Break

3:00 p.m.
Panel 5: 
HIV/AIDS Information for Patients and the Affected Community
Co-Chairs: Reggie Williams, National Task Force on AIDS
Prevention, San Francisco, CA; Michelle Wilson, The Positive
Woman, Inc., Washington, DC

4:00 p.m.
General Discussion

4:45 p.m.
Concluding Remarks--Donald A. B. Lindberg, M.D., Director,
National Library of Medicine

5:00 p.m.
Adjourn


WEDNESDAY, JUNE 30

9:00 a.m. þ 3:30 p.m.
Panel Co-Chairs, Case Study Presenters, NIH Staff draft report
and recommendations

***************

APPENDIX D: NIH HIV/AIDS INFORMATION SERVICES 
CONFERENCE PLANNING COMMITTEE

Elliot R. Siegel, Ph.D., Chair
Associate Director for Health Information Programs Development
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD 20894
(301) 496þ8834
FAX: (301) 496þ4450

Michael J. Ackerman, Ph.D.
Acting Associate Director, Specialized Information Services
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD 20894
(301) 496þ3147
FAX: (301) 480þ3537

Joanne Allport, M.D., M.P.H.
Medical Officer
Office of AIDS Research
Building 1, Room 201 (mailing address)
Building 31, Room 2B37 (office)
National Institutes of Health
Bethesda, MD 20892
(301) 402þ4726
FAX: (301) 402þ7769

Cornelius Baker
Director of Public Policy and Education
National Association of People With AIDS
1413 K Street, NW
Washington, DC 20005
(202) 898þ0414
FAX: (202) 898þ0435

Fred Boykin, L.I.C.S.W.
Clinical Social Worker
Social Work Department
Building 10, Room 1C144
National Institutes of Health
Bethesda, MD 20892
(301) 496þ2381
FAX: (301) 402þ1573

Susan P. Buyer
Deputy Assistant Director for Planning and Evaluation
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD 20894
(301) 496þ2311
FAX: (301) 496þ4450

Lois Ann Colaianni
Associate Director for Library Operations
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD 20894
(301) 496þ6921

Robert Darga, M.D.
Director of Programs
National Association of People With AIDS
1413 K Street, NW
Washington, DC 20005
(202) 898þ0414
FAX: (202) 898þ0435

Gale A. Dutcher
Special Assistant to the Associate Director
Specialized Information Services
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD 20894
(301) 496þ3147 or 496þ2311
FAX: (301) 480þ3537 or 496þ4450

John H. Ferguson, M.D.
Director, Office of Medical Applications of Research
Federal Building, Room 618
National Institutes of Health
Bethesda, MD 20892
(301) 496þ5641
FAX: (301) 402þ0420
       
Vesta M. Jones
Manager of Information Systems
National AIDS Program Office
Office of the Assistant Secretary for Health
200 Independence Ave., SW
Room 738G
Washington, DC 20201
(202) 690þ6248
FAX: (202) 690þ6584

Jack Killen, M.D.
Deputy Director
Division of Acquired Immunodeficiency Syndrome
National Institute of Allergy and Infectious Diseases
National Institutes of Health
Building 31, Room 7A03
Bethesda, MD 20892
(301) 496þ9088
FAX: (301) 496þ4409

Robert Mehnert
Chief, Office of Public Information
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD 20894
(301) 496þ6308
FAX: (301) 496þ4450
       
Linda Reck
Senior Program Analyst
Office of AIDS Research
Building 31, Room 5C06
National Institutes of Health
Bethesda, MD 20892
(301) 496þ0358
FAX: (301) 402þ7769

Harold Schoolman, M.D.
Deputy Director for Research and Education
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD 20894
(301) 496þ4725
FAX: (301)496þ4450

Anne Thomas
Director of Information
NIH Office of Communications
Building 1, Room 344
National Institutes of Health
Bethesda, MD 20892
(301) 496þ4461
FAX: 496þ0017

Jack Whitescarver, Ph.D.
Deputy Director, Office of AIDS Research
Building 1, Room 201
National Institutes of Health
Bethesda, MD 20892
(301) 496þ0357
FAX: (301) 402þ2047

Conference Support
Ruthann Bates
Vice President, Health Programs
Aspen Systems Corporation
1600 Research Blvd.
Rockville, MD 20852
(301) 251þ5160
FAX: (301) 738þ6616

Jack Harvey
Social and Scientific Systems
7101 Wisconsin Avenue, Suite 610
Bethesda, MD 20814
(301) 986þ4870
FAX: (301) 913þ0351

Henry M. Kissman, Ph.D.
Consultant, Aspen Systems Corporation
1010 Cresthaven Dr.
Silver Spring, MD 20903
(301) 434þ5338 (Voice and FAX)

Peggy Van Ness
Social and Scientific Systems
7101 Wisconsin Avenue, Suite 610
Bethesda, MD 20814
(301) 986þ4870
FAX: (301) 913þ0351

***************

APPENDIX E: PANEL MEMBERS AND CO-CHAIRS

Panel 1: HIV/AIDS Information for Clinical Researchers

       C. Lynn Besch, M.D., Louisiana Community AIDS Research
       Program, Tulane University, New Orleans, LA (CPCRA),
       co-chair

       Charles Carpenter, M.D., Brown University School of
       Medicine, Providence, RI (also chairman of NIH AIDS
       Program Advisory Committee), co-chair

       John Carey, M.D., University Hospitals of Cleveland

       Judith Blackfield Cohen, Ph.D., Association for Womenþs
       AIDS Research and Education, San Francisco, CA

       James Dearing, Ph.D., Department of Communication,
       Michigan State University

       John D. Hamilton, M.D., Department of Veterans Affairs,
       Medical Center, Durham, NC

       Donna L. Keegan, Central Advisory Board, Massachusetts
       Department of Public Health, AIDS Bureau

Panel 2: HIV/AIDS Information for Medical, Dental, and Nursing
Providers

       P. T. Cohen, M.D., San Francisco General Hospital,
       co-chair

       Neil Schram, M.D., AIDS Task Force, American Association
       of Physicians for Human Rights, Los Angeles, CA, co-chair

       Mary Boland, R.N., Director, National Pediatric HIV
       Resource Center, Childrenþs Hospital of New Jersey,
       Newark, NJ

       Sharon Brodeur, R.N., M.P.A., INOVA Health Systems,
       Virginia

       John James, Editor, AIDS Treatment News, San Francisco

       Marshall Kubota, M.D., private physician

       Ronald Porter, La Frontera Center, Tuscon, AZ,

       Henry Wray, D.D.S., Whitman-Walker Clinic, Washington, DC

Panel 3: HIV/AIDS Information for Allied Health Services
Providers

       Caitlin Ryan, M.S.W., Chief, Office of AIDS
       Administration, Washington, DC, Department of Health and
       Human Services, co-chair

       Cornell Scott, Director, New Haven Community Health
       Center, New Haven, CT, co-chair

       William Bailey, Ph.D., American Psychological
       Association, Washington, DC

       Suzanne Gagnon, M.D., University of Kansas Medical School
       at Wichita

       Lark Lands, Ph.D., Carl Vogel Center, Washington, DC

       Vickie Strange, HANDI Advisory Committee, Elfand, NC

       Russ Toth, Computerized AIDS Information Network (CAIN),
       Los Angeles, CA

Panel 4: HIV/AIDS Information for the 
Media and the General Public

       Philip Hilts, New York Times, co-chair

       Joanne Silberner, National Public Radio, co-chair

       Jon Cohen, Science

       Mindy Thompson Fullilove, M.D., Associate Professor,
       Clinical Psychiatry and Public Health, Columbia
       University 

       Mary Hagar, Newsweek

       Jean Hofacket, AIDS Library of Philadelphia, PA 

       Lisa Keen, Washington Blade

       Joseph Palca, National Public Radio

       Ryland Roan, Richmond City Health Department, VA

Panel 5: HIV/AIDS Information for Patients and the Affected
Community

       Reggie Williams, Executive Director, National Task Force
       on AIDS Prevention, San Francisco, CA, co-chair

       Michelle Wilson, The Positive Woman, Inc., Washington,
       DC, co-chair

       Moises Agosto, National Minority AIDS Council,
       Washington, DC

       David Barr, Gay Menþs Health Crisis, New York, NY

       Jerome Boyce, Project Survival, Detroit, MI

       Rebecca Dennison, Women Organizing to Respond to
       Life-Threatening Diseases, Oakland, CA

       Daniel Greening, Sci.med.aids Internet Newsgroup

       Ronnie Mealy, Carl Vogel Foundation, Washington, DC

       Cheryl Tyiska, National Organization for Victims
       Assistance, Washington, DC

       Sandra Vining-Bethea, Bridgeport Womenþs Project,
       Bridgeport, CT 

***************

APPENDIX F: CASE STUDY SYNOPSES


Panel 1: HIV/AIDS Information for Clinical Researchers

Research and the Popular Press: Improving Coverage

In a letter appearing in the journal Lancet, the Medical Research
Council (Britain) and INSERM (France) jointly release a summary
of preliminary results of the Concorde trial.(4) This study
focuses on the role of AZT in the early treatment of HIV disease.
Should the physician prescribe it immediately or wait until the
onset of symptoms? The trials were opened in October 1988 and
closed to accrual in October 1991.

The Lancet letter describes results of an "intent to treat"
analysis including data through December 1992, a mean followup of
3 years. "The authors state that the immediate use of this
medication did not result in any significant benefit as compared
to deferred therapy in terms of survival or disease progression."
When comparing their findings to reports that describe events
during a shorter followup period, the authors state that "The
findings from Concorde at a comparable short followup time were
not inconsistent with [the delay in progression to AIDS or ARC,
but]. . . such a delay was not seen over the longer followup
period."

The translation of this study by the popular press ranges from
thoughtful to misleading. Coverage seems to center on the
conflict between this study's results with earlier results,
rather than presenting them in a larger picture of data from
other studies.

The desire of the investigators to make preliminary information
available is laudable. However, the process for its release
provides insufficient data for other researchers, primary care
providers, or patients to make fully informed assessments of the
implications of the study.

Considering these problems, certain questions are raised: How can
the scientific community better serve itself and the world in
quickly and comprehensively presenting the results of incremental
research advances? How can the popular press improve coverage of
important medical news so that it is presented in a proper and
complete perspective?

Panel 2: HIV/AIDS Information for Medical, Dental, and Nursing
Providers

Needed: Timely and Coordinated Release of Research Results

An open comparison study of ddI and ddC with the progression of
HIV/AIDS (including death) and tolerance of the study drugs was
conducted by Community Programs for Clinical Research on AIDS
(CPRCA). Research by this group involves community physicians and
their patients in studies that evaluate the effectiveness of a
broad spectrum of therapies and treatment regimens. Through this 
diversity, CPRCA extends the opportunity for participation in
clinical research to persons underrepresented in traditional HIV
studies.

The study opens in December 1990 and by September 1991 the last
patient enrolls. For the next year all patients are followed. On
January 20, 1993, results are sent to the CPCRA principal
investigators and to the NIH AIDS Research Advisory Committee.
The Committee recommends that a "Note to Physicians" be sent out
by NIAID detailing what has been learned.

In the meantime, AIDS activists learn that the results of the
study are known and insist that, for ethical reasons, the public
should be made aware of these results as soon as possible. Thus,
a press 
release is sent to the popular media on January 22. The "Note to
Physicians," with details of the study results, is held up
pending review by the many individuals involved in the study's
implementation.

Ten days later, on February 1, 1993, CPRCA releases the Note to a
wide list of more than 4,000, including 2,500 physicians who care
for HIV-infected patients, other health care providers, a press
list of 141 writers and reporters, and others who have requested
information.

The result of the delay between issuing the press release and
distributing the "Note to Physicians" is that for 10 days
clinical providers have only the information in a newspaper story
to rely on in advising their patients. Also, some physicians will
never receive the Note. Optimum patient care under such
circumstances is impossible.

Panel 3: HIV/AIDS Information for Allied Health Professionals

Allied Health Professionals: Lack Access

Margaret enters the office of her supervisor and after a few
perfunctory words the supervisor says, "Sit down, because I have
a tough case for you."

Margaret, a social worker in a multicultural, low-income area of
Chicago, learns that her new client, an African-American woman,
aged 31 with three children, married to an injecting drug user,
has been diagnosed with AIDS. She has failed to show up for her
last two appointments, continues to have unprotected sexual
intercourse, and has not taken her medications regularly.
Although Margaret has only limited experience with the HIV
population, this client is referred to her for case management.

Learning that the client's condition and attitude is all too
typical, Margaret decides to design an effective program for
HIV-infected African-American women. Initially, she speaks to
another case worker in her office who provides her with case
summaries that deal with intervention strategies in general. Then
she turns to the National Association of Social Workers, which
sends her a packet of information including a literature search
from its database, Social Work Abstracts.

Another source, the CDC National AIDS Clearinghouse, sends a
search from its Educational Materials Database, which includes
descriptions and sources of materials relating to HIV disease
pertaining to IV drug users and their partners. The Clearinghouse
also suggests that Margaret check with her local hospital and
university library to see if they will provide literature
searches from NLM's AIDSLINE and POPLINE, as well as from
Sociological Abstracts and PsycINFO (the psychological abstracts
database).
These tools enable Margaret to find several journal articles and
texts in the library that provide a thorough review of all these
issues as well as actual case studies. She develops a
comprehensive treatment plan and program taking into account this
client's history and ethnic background.

Panel 4: HIV/AIDS Information for the Media and the General
Public

Ensuring Accurate Information for the Public: 
A Continuing Problem

The difficulties faced by public health agencies in ensuring the
dissemination of accurate AIDS information to the media and the
public are illustrated by two recent controversies. The first
involves Peter Duesberg, a professor at the University of
California at Berkeley, who, in March 1987, startles his
colleagues and the public with an announcement that he does not
believe the dominant view among the world's scientists that HIV
causes AIDS. His continual attacks on what he terms the "AIDS
establishment" draw sharp rebuttals from eminent researchers in
the United States. Dr. Duesberg contends that correlation is not
causation; there must be another unknown agent more virulent than
HIV that is causing AIDS. Dr. Duesberg is often quoted by
journalists concerning alternative theories of the cause of AIDS.

The second controversy is set at the VIII International
Conference on AIDS in Amsterdam in 1992. In the corridors, at
cocktail parties, and during council meetings, attendees discuss
the article in a weekly news magazine that a few aberrant cases
of people with AIDS who did not test HIV-positive indicate that
there could be a new transmissible virus. Its sudden and
prominent appearance, and the realization by science writers that
they had been "scooped" on a major story by a mass market
magazine, cause journalists to focus on this "mystery virus" to
the virtual exclusion of the 1,100 papers and their authors
scheduled for the conference.

Conference organizers respond to the media rush by convening a
special scientific session and a press conference to address the
issue. The scheduling of the special session lends further
credibility to the mystery virus story. Unintentionally,
government representatives reveal that information has been
withheld about the existence of certain patients. Highly regarded
researchers in the audience lend credibility to the rumor of a
new virus by admitting that they were observing similar patients.

Weeks after the conference and hundreds of news stories about the
possibility of a new sexually transmitted virus, CDC and NIH
determine that there is no evidence of an unknown virus. The
cases remain mysterious but do not indicate transmission or
contagion. The focus on this mystery virus seems to create a
problem that, in reality, does not exist.

Panel 5: HIV/AIDS Information for Patients and the Affected
Community

HIV/AIDS Patients: Information Difficult to Find

Lucille became HIV-infected as a result of unprotected sex. She
works full-time and has a 20-year-old daughter and a young
grandson who live with her. She also supports her severely
disabled husband, who has AIDS.

As a group member of a health maintenance organization, she
visits her primary care physician for regular checkups every 4
months. He spends 10 to 15 minutes with her, going over current
health concerns and recent blood test results.

During her third visit Lucille asks about the possibility (or
desirability) of becoming involved in a clinical trial. The
doctor promises that if she did the research and found out about
the various trials, he would provide an opinion on whether or not
she should become involved.

To find clinical trials as well as current and potential
treatments, including nontraditional treatment, Lucille goes to
her local library. Then she contacts State and Federal Government
health agencies for information by mail. Finally, she seeks data
from leading HIV/AIDS organizations. That leads to a list of
newsletters and bulletins published by health agencies and
grassroots/activist groups.

The array of information grows. Some is highly technical, some
elementary, some conflicting (i.e., Newsletter A touts the
benefits of a certain course of treatment while Newsletter B
states that it is useless or downright harmful). Little, if any,
is geared toward the specific needs of women.

While Lucille is intelligent and resourceful, it quickly becomes
apparent that more is required. Much of the information available
is via online computer systems. Lucille has no funds to pay for
the information, no access to a computer, and no training in how
to retrieve online data.

The stress of "trying to keep it all together" is getting tough.
She finds little or no substantive information available about
the long-term psychological reactions to living with HIV. This
material would be useful for Lucille as well as for her daughter
and husband, who are also under a great deal of stress.

Her quest for information on AIDS clinical trials is rewarded
with information on the Community Programs for Clinical Research
on AIDS, which is composed of 17 research units, consisting of
consortiums of primary care physicians and nurses located in 13
U.S. cities. Since these units represent geographic, racial, and
risk group diversity, they extend greater opportunity for
participation in clinical research to persons, such as Lucille,
who are underrepresented in traditional HIV studies.

Lucille's case, too, is anecdotal and deliberately cast as
atypical to make a poignant point to the conference panel: If
locating basic information is difficult for Lucille, how much
tougher might it be for someone less resourcefulþsomeone who
doesn't speak English well . . . or read well?

Could there be one-stop shopping for information, through primary
health providers, which would ease the burden for women who have
to work and care for families even while they are concerned about
their own health? How can information be disseminated to people
who do not seek regular medical care or who are hospitalized or
are in long-term care facilities, or incarcerated?

***************

APPENDIX G: CONFERENCE PARTICIPANTS

Robin Abner
Membership Director
Friends of the National Library of Medicine
1555 Connecticut Avenue, NW, Suite 200
Washington, DC  20036
(202) 462þ9600
(202) 462þ9043 (FAX)

Michael J. Ackerman, Ph.D.
Acting Associate Director
Specialized Information Services
National Library of Medicine
National Institutes of Health
Building 38A, Room 3S324
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ3147
(301) 480þ3537 (FAX)

Moises Agosto
Treatment and Research Advocacy Manager
National Minority AIDS Council
300 I Street, NE, Suite 400
Washington, DC  20002þ4389
(202) 546þ6119
(202) 544þ0378 (FAX)

Joanne Allport, M.D., M.P.H.
Medical Officer
Office of AIDS Research
National Institutes of Health
Building 1, Room 201
Bethesda, MD  20892
(301) 402þ4726
(301) 402þ7769 (FAX)

Karen Babich, R.N., Ph.D.
Director
Knowledge Exchange Program
National Institute of Mental Health
National Institutes of Health
5600 Fishers Lane
Rockville, MD  20857
(301) 443þ4597
(301) 443þ1328 (FAX)

Dorothy Bailey
Health Resources and Services Administration
Bureau of Health Resources Development
Office of Communications
Parklawn Building, Room 9Aþ33
5600 Fishers Lane
Rockville, MD  20857
(301) 443þ6846
(301) 443þ3608 (FAX)

William A. Bailey
Legislative and Federal Affairs Officer
American Psychological Association
750 First Street, NE
Washington, DC  20002þ4242
(202) 336þ6066
(202) 336þ6063 (FAX)

Cornelius Baker
Director of Public Policy and Education
National Association of People With AIDS
1413 K Street, NW
Washington, DC  20005
(202) 898þ0414
(202) 898þ0435 (FAX)

Tim Baker
Data Manager
Office of HIV/AIDS
Centers for Disease Control and Prevention
1600 Clifton Road, MSþE24
Atlanta, GA  30333
(404) 639þ0973
(404) 639þ0943 (FAX)

David Barr
Policy Department
Gay Menþs Health Crisis
129 West 20th Street
New York, NY  10011
(212) 807þ6664
(212) 337þ1220 (FAX)

Ruthann Bates
Vice President
Health Programs
Aspen Systems Corporation
1600 Research Boulevard
Rockville, MD  20852
(301) 251þ5160
(301) 738þ6616 (FAX)

Vivian L. Beetle
Director of Community Affairs
Hoffmann-LaRoche
340 Kingsland Street
Nutley, NJ  07110
(201) 235þ2055
(201) 235þ2221 (FAX)

Myron Belfer, M.D.
Acting Associate Administrator for the Office on AIDS
Substance Abuse and Mental Health Services 
   Administration
5600 Fishers Lane, Room 12C10
Rockville, MD  20857
(301) 443þ5305
(301) 443þ0284 (FAX)

Yvette Benjamin, P.A.-C.
Consultant
108 Pembrooke View Lane
Gaithersburg, MD  20877
(301) 963þ5822

Freda Bernstein, M.L.S.
Aspen Systems Corporation
1600 Research Boulevard
Rockville, MD  20852
(301) 251þ5160
(301) 738þ6616 (FAX)

Lynn Besch, M.D.
Louisiana Community AIDS Research Program
Tulane University Medical Center
1430 Tulane Avenue
New Orleans, LA  70112
(504) 584þ1971
(504) 584þ1972 (FAX)

Anne Blank, M.S.J.
Writer/Editor
National Institute of Child Health and Human 
   Development
National Institutes of Health
Building 31, Room 2A32
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ5133
(301) 496þ4757 (FAX)

Alicia Blessington
Regional NAPO/FDA Coordinator
U.S. Public Health Service
3535 Market Street, Room 10200
P.O. Box 13716
Philadelphia, PA  10200
(215) 596þ0488
(215) 596þ0123 (FAX)

Mary Boland, R.N., M.S.N.
Childrenþs Hospital of New Jersey
15 South 9th Street
Newark, NJ  07107
(201) 268þ8267
(201) 485þ7769 (FAX)

Naomi C. Booker
Chair and President
Marketing and Management Innovations, Inc.
Village of Cross Keys, Suite 314
Quadrangle East
2 Hamill Road
Baltimore, MD  21210
(410) 433þ0400
(410) 433þ0478 (FAX)

Jerome Boyce
Assistant Director
Project Survival
1647 Glendale Road
Detroit, MI  48238
(313) 961þ7740

Fred Boykin, L.I.C.S.W.
Clinical Social Worker
Social Work Department
Building 10, Room 1C144
National Institutes of Health
Bethesda, MD  20892
(301) 496þ2381
(301) 402þ1573 (FAX)

Mary Brasler, R.N., Ed.D.
Coordinator of Education and Training
Community Programs for Clinical Research on AIDS
R.O.W. Sciences, Inc.
1700 Research Boulevard
Rockville, MD  20850
(301) 294þ5438
(301) 294þ5796 (FAX)

Noel A. Brathwaite, M.S.Ph., Ph.D.
Project Director
The National Association of Black Psychologists
P.O. Box 55999
Washington, DC  20040þ5999
(202) 722þ0808
(202) 722þ5941 (FAX)

Kenneth Bridbord, M.D.
Chief, International Studies Branch
Fogarty International Center
National Institutes of Health
Building 31, Room B2C32
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ2516
(301) 402þ2056 (FAX)

Sharon Brodeur, R.N., M.P.A.
Director, HIV Services
Office of HIV Services
Inova Health Systems
2832 Juniper Street
Fairfax, VA  22031
(703) 204þ3782
(703) 204þ3798 (FAX)

Mona Brown
Community and Professional Education Branch
National Institute on Drug Abuse
National Institutes of Health
Parklawn Building, Room 10A39
5600 Fishers Lane
Rockville, MD  20857
(301) 443þ6441
(301) 443þ7397 (FAX)

Susan Brown
Analyst
American Red Cross
431 D Street, NW
Washington, DC  20006
(202) 434þ4029
(202) 434þ4055 (FAX)

Colonel Donald S. Burke, M.D.
Director, Division of Retrovirology
Walter Reed Army Institute of Research
13 Taft Court, Suite 201
Rockville, MD  20850
(301) 295þ6414

Suzetta C. Burrows, M.L.S.
Associate Professor and Vice Chair
Louis Calder Memorial Library
University of Miami School of Medicine
P.O. Box 016950
Miami, FL  33101
(305) 547þ6441
(305) 325þ8853 (FAX)

Susan P. Buyer
Deputy Assistant Director
Planning and Evaluation
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ2311
(301) 496þ4450 (FAX)

John T. Carey, M.D.
University Hospitals of Cleveland
Foley Building
2061 Cornell Road
Cleveland, OH  44106
(214) 844þ8786
(214) 844þ5356 (FAX)

Martha Ann Carey, R.N., Ph.D.
Nurse Scientist Administrator
National Center for Nursing Research
National Institutes of Health
Westwood Building, Room 757
5333 Westbard Avenue
Bethesda, MD  20816
(301) 594þ7590
(301) 594þ7603 (FAX)

Charles Carpenter, M.D.
Professor of Medicine
Brown University
The Meriam Hospital
164 Summit Avenue
Providence, RI  02906
(401) 331þ8500, Ext. 4025
(401) 331þ8501 (FAX)

Joe Clarke
AIDS Education and General Information System               
(AEGIS)
P.O. Box 184
San Juan Capistrano, CA  92693þ0184
(714) 248þ5843
(714) 248þ2839 (FAX)

Lance C. Clem
Director
Governorþs AIDS Council
Office of the Governor
136 State Capitol Building
Denver, CO  80203
(303) 837þ4869
(303) 837þ4813 (FAX)

Jon Cohen
Reporter/Writer
Science
1333 H Street, NW
Washington, DC  20005
(202) 326þ6595
(202) 371þ9227 (FAX)

Judith Blackfield Cohen, Ph.D.
Director
Association for Womenþs AIDS Research and Education
3180 18th Street, Suite 205
San Francisco, CA  94110
(415) 476þ4091
(415) 476þ0362 (FAX)

P.T. Cohen, M.D., Ph.D.
AIDS Program
San Francisco General Hospital
Building 80, Ward 84
1001 Potrero Avenue
San Francisco, CA  94110
(415) 206þ8410
(415) 476þ6953 (FAX)

Lois Ann Colaianni
Associate Director for Library Operations
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ6921

Linda Cook
Chief
Office of Information and Legislative Affairs
National Center for Nursing Research
National Institutes of Health
Building 31, Room 5Bþ13
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ0207
(301) 480þ4969 (FAX)

Paul Corser
Director of Grants Program
American Foundation for AIDS Research
733 Third Avenue, 12th Floor
New York, NY  10017þ3204

Mary F. Cotton
Director of HIV/AIDS Education
American Red Cross
National Headquarters
1709 New York Avenue, NW, Suite 208
Washington, DC  20006
(202) 434þ4050
(202) 434þ4055 (FAX)

Jane L. Courtless, R.N., B.S.N.
Clinical Supervisor
George Washington University, Medical Center 
   Clinical Trial Unit
2300 I Street, NW, Suite 202
Washington, DC  20037
(202) 994þ2417
(202) 994þ0899 (FAX)

Robert Darga, M.D.
Director of Programs
National Association of People With AIDS
1413 K Street, NW
Washington, DC  20005
(202) 898þ0414
(202) 898þ0435 (FAX)

Samarpita Das, M.H.S.
Program Director (HIV)
Indochinese Community Center (ICE)
1628 16th Street, NW
Washington, DC  20009
(202) 462þ4330
(202) 462þ2774 (FAX)

James W. Dearing, Ph.D.
Department of Communications
Michigan State University
East Lansing, MI  48824þ1212
(517) 355þ1820
(517) 336þ1192 (FAX)

Rebecca S. Dennison
Director
Women Organized to Respond to Life-
   Threatening Diseases
440 Rich Street
Oakland, CA  94609
(510) 658þ6930
(510) 601þ9746 (FAX)

Elias A. Dorsey
Deputy Commissioner of Health
Baltimore City Health Department
303 East Fayette Street
Baltimore, MD  21202
(410) 396þ4392
(410) 396þ1571 (FAX)

Ginny Dupont
Library Director
Department of Veterans Affairs Central Office
Library, 142 D
810 Vermont Avenue, NW
Washington, DC 20420
(202) 523þ1612
(202) 535þ7539 (FAX)

Gale A. Dutcher, M.L.S.
Special Assistant to the Associate Director
Specialized Information Services
National Library of Medicine
National Institutes of Health
Building 38A, Room 3N316
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ3147
(301) 480þ3537 (FAX)

Eve T. Early, M.T., M.A.
Infection Control Practice
Holy Cross Hospital
1500 Forest Glen Road
Silver Spring, MD  20910
(301) 905þ1190
(301) 905þ1045 (FAX)

Sister Mary Elizabeth
AIDS Education and General Information System   
   (AEGIS)
P.O. Box 184
San Juan Capistrano, CA  92693þ0184
(714) 248þ5843
(714) 248þ2839 (FAX)

Anthony Fauci, M.D.
Director
National Institute of Allergy and Infectious 
   Diseases
National Institutes of Health
Building 1, Room 201
Bethesda, MD  20892
(301) 496þ2263
(301) 496þ4842 (FAX)

John H. Ferguson, M.D.
Director
Office of Medical Applications of Research
National Institutes of Health
Federal Building, Room 618
Bethesda, MD 20892
(301) 496þ5641
(301) 402þ0420 (FAX)

Ted Foor
Office of the Assistant Secretary for Health
National AIDS Program Office
Hubert H. Humphrey Building, Room 738G
200 Independence Avenue, SW
Washington, DC  20201
(202) 690þ6248
(202) 690þ6584 (FAX)

Brenda Wood Francis, M.P.H., R.D.
Executive Director
Baltimore Community Research Initiative
University of Maryland at Baltimore
22 South Greene Street
Baltimore, MD  21217
(410) 328þ3588
(410) 328þ4430 (FAX)

Debra Fraser-Howze
Executive Director
Black Leadership Commission on AIDS
105 East 22nd Street, 6th Floor
New York, NY  10010
(212) 614þ0023
(212) 614þ0057 (FAX)

William J. Freeman
Executive Director
National Association of People With AIDS
1413 K Street, NW, 8th Floor
Washington, DC  20005
(202) 898þ0414
(202) 898þ0435 (FAX)

Mindy T. Fullilove, M.D.
Associate Professor of Clinical Psychiatry and 
   Public Health
New York State Psychiatric Institute and 
   Columbia University
722 West 168th Street, Unit 29
New York, NY  10032
(212) 740þ7292
(212) 795þ4222 (FAX)

Suzanne Gagnon, M.D.
Director of Clinical Research
University of Kansas Medical School at Wichita
1010 North Kansas
Wichita, KS 67214
(316) 261þ2617
(316) 261þ2672 (FAX)

Paul Gaist
Senior Advisor
Office of AIDS Research
National Institutes of Health
Building 31, Room 5C06
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ0358
(301) 402þ7769 (FAX)

Ben Gardiner
System Administrator
AIDS Info BBS
P.O. Box 421528
San Francisco, CA  94142þ1528
(415) 626þ1245
(415) 626þ9415 (FAX)

Janice M. George, L.I.C.S.W.
Deputy Director
DC Womenþs Council on AIDS
715 8th Street, SE
Washington, DC  20003
(202) 544þ8255
(202) 433þ4070 (FAX)

Bryan E. Glover
Coordinator
DC AIDS Information Line
Whitman-Walker Clinic
1407 S Street, NW
Washington, DC  20009
(202) 939þ7822
(202) 797þ3504 (FAX)

Barry Gordon, R.Ph.
Regional AIDS Coordinator
Region II
U.S. Public Health Service
Jacob K. Javits Federal Building, Room 3337
26 Federal Plaza
New York, NY  10278
(212) 264þ2535
(212) 264þ1324 (FAX)

Nigel L. Gragg, R.Ph.
President
The Foundation of Pharmacists and 
   Corporate America for AIDS Education
700 13th Street, NW, Suite 950
Washington, DC  20005
(202) 434þ4515
(202) 434þ4514 (FAX)

Wayne L. Greaves, M.D.
Associate Professor of Medicine
Infection Control Office, Room 2070
Howard University Hospital
2041 Georgia Avenue, NW
Washington, DC  20060
(202) 806þ4705
(202) 806þ4787 (FAX)

Dan Greening
Moderator
Sci.med.aids Internet Newsgroup
c/o Software Transformation
1601 Saratoga-Sunnyvale Road, #100
Cupertino, CA  95014
(408) 973þ8081, Ext. 313
(408) 973þ0989 (FAX)

Joe Guimento
Treatment Information Services
American Foundation for AIDS
  Research (AmFAR)
733 Third Avenue, 12th Floor
New York, NY  10017þ3204
(212) 682þ7440

Mary Hagar
Newsweek
1750 Pennsylvania Avenue, NW
Washington, DC  20006
(202) 626þ2062
(202) 626þ2011 (FAX)

John Hamilton, M.D.
Chief
Infectious Disease Section
Veterans Administration Medical Center
   and Professor of Medicine
Duke University Medical Center
508 Fulton Street
Durham, NC  27705
(919) 286þ6950
(919) 286þ6895 (FAX)

Alan S. Harris, M.B.A.
Regional AIDS Coordinator, Region IX
U.S. Public Health Service
50 United Nations Plaza
San Francisco, CA  94102
(415) 556þ1138
(415) 556þ2356 (FAX)

Lee Harrison, P.A.
Home Nutrition Services HIV-NET BBS
6500 Fannin, Suite 1001
Houston, TX  77030
(713) 790þ1873
(713) 790þ0261 (FAX)

Harry Haverkos, M.D.
Acting Director
Division of Clinical Research
National Institute on Drug Abuse
National Institutes of Health
5600 Fishers Lane, Room 10Aþ38
Rockville, MD  20857
(301) 443þ6697
(301) 443þ2317

Jerry W. Helton
Director, Infectious Disease Products
The Upjohn Company
7000 Portage Road
Kalamazoo, MI  49001
(616) 323þ4922
(616) 323þ7139 (FAX)

Jane Hermann, R.N.
AIDS Clinical Trials Information Service (ACTIS)
P.O. Box 6421
Rockville, MD  20849þ6003
(301) 251þ5750
(301) 738þ6616 (FAX)

James C. Hill, Ph.D.
Deputy Director
National Institute of Allergy and Infectious 
   Diseases
National Institutes of Health
Building 31, Room 7A03
9000 Rockville Pike
Bethesda, MD  20892

Philip Hilts
The New York Times
1627 I Street, NW
Washington, DC  20006
(202) 862þ0300
(202) 862þ0340 (FAX)

Jean Hofacket
Director of Information Services
AIDS Information Network
32 North Third Street
Philadelphia, PA  19106
(215) 922þ5120
(215) 922þ6762 (FAX)
(215) 922þ7999 (TDD)

Michael Howe, M.S.L.S.
AIDS Information Librarian
Veterans Administration Medical Center
Library Service (142D)
4150 Clement Street
San Francisco, CA  94121
(415) 221þ4810
(415) 750þ6919 (FAX)

Jeffrey T. Huber, Ph.D.
Assistant Professor
School of Library and Information Studies
Texas Womenþs University
P.O. Box 22905
Denton, TX  76204þ0905
(817) 898þ2609
(817) 898þ3198 (FAX)

David Jackson
CDC National AIDS Clearinghouse
Centers for Disease Control and Prevention
P.O. Box 6003
Rockville, MD  20849þ6003
(301) 251þ5775
(301) 738þ6616 (FAX)

John James
Editor and Publisher
AIDS Treatment News
P.O. Box 411256
San Francisco, CA  94141
(415) 861þ2432
(415) 255þ4659 (FAX)

Vesta M. Jones
Manager of Information Systems
National AIDS Program Office
Office of the Assistant Secretary for Health
200 Independence Avenue, SW
Room 738G
Washington, DC  20201
(202) 690þ6248
(202) 690þ6584 (FAX)

CAPT W.W. Karney
HIV Program Manager
National Naval Medical Center
Bethesda, MD  20814
(301) 295þ0724

Deborah G. Katz, M.S., R.N.
Director
Office of Scientific Information and Reports
Division of AIDS
National Institute of Allergy and Infectious Diseases
National Institutes of Health
Solar Building, Room 2A20
6003 Executive Boulevard
Rockville, MD  20892
(301) 496þ8000
(301) 402þ1505 (FAX)

Pearl Katz, Ph.D.
Health Resources and Services Administration
5600 Fishers Lane, Room 14Aþ21
Rockville, MD  20857
(301) 443þ4588
(301) 443þ1551 (FAX)

Donna L. Keegan
Consumer, Central Advisory Board
Massachusetts Department of Public Health, 
   AIDS Bureau
Rural Route 1
Athol, MA  01331
(508) 724þ0282

Lisa Keen
Senior Editor
The Washington Blade
1408 U Street, NW
Washington, DC  20009þ3916
(202) 797þ7000
(202) 797þ7040 (FAX)

Jack Killen, M.D.
Deputy Director
Division of AIDS
National Institute of Allergy and Infectious 
   Diseases
National Institutes of Health
Building 31, Room 7A03
Bethesda, MD  20892
(301) 496þ9088
(301) 496þ4409 (FAX)

Henry M. Kissman, Ph.D.
Consultant
Aspen Systems Corporation
1010 Cresthaven Drive
Silver Spring, MD  20903
(301) 434þ5338
(301) 434þ5338 (FAX)

Thomas W. Kober
Program Development Specialist
Gallaudet University National Academy
800 Florida Avenue, NE
Washington, DC  20002
(202) 651þ5096
(202) 651þ5595 (FAX)

Joy Koenig, M.D., M.Sc.
Associate Regional Health Administrator for
   Clinical Affairs
U.S. Public Health Service
Room 1400
John F. Kennedy Federal Building
Boston, MA  02203
(617) 565þ4825
(617) 565þ3644 (FAX)

Robert N. Kohmescher
Centers for Disease Control and Prevention, NAIEP
1600 Clifton Road, NE (E25)
Atlanta, GA  30329
(404) 639þ0956
(404) 639þ0973 (FAX)

Keith Krueger
Executive Director
Friends of the National Library of Medicine
1555 Connecticut Avenue, NW, Suite 200
Washington, DC  20036
(202) 462þ9600
(202) 462þ9043 (FAX)

John Krzemien, R.N., Ph.D.
Regional HIV Coordinator
Region V
U.S. Public Health Service
105 West Adams Street, 17th Floor
Chicago, IL  60603
(312) 353þ1385
(312) 353þ0718 (FAX)

Marshall Kubota, M.D.
2403 Professional Drive, Suite 104
Santa Rosa, CA  95404
(707) 527þ1975
(707) 869þ2849
(707) 527þ1170 (FAX)

Kiyoshi Kuromiya
Project Director/Editor
Critical Path AIDS Project
2062 Lombard Street
Philadelphia, PA  19146
(215) 545þ2212
(215) 735þ2762 (FAX)

Candace Kurtz
Protocol Administrator
National Institutes of Health
Building 10, Room 7D43
Bethesda, MD  20892
(301) 402þ0586
(301) 402þ3551 (FAX)

Garey Lambert
Vice-President and Publications Program Director
AIDS Action Baltimore, Inc.
2105 North Charles Street
Baltimore, MD  21218
(410) 837þ2437
(410) 837þ2438 (FAX)

Lark Lands, Ph.D.
Nutritionist
c/o Carl Vogel Foundation, Inc.
1413 K Street, NW, 3rd Floor
Washington, DC  20005
(202) 289þ4898
(202) 789þ2599 (FAX)

Jennifer Lehman
Office of the Assistant Secretary for Health
National AIDS Program Office
Hubert H. Humphrey Building, Room 738G
200 Independence Avenue, SW
Washington, DC  20201
(202) 690þ6248
(202) 690þ6584 (FAX)

Susan F. LeLacheur, P.A.-C., M.P.H.
Physician Assistant
The George Washington University
2300 Eye Street, NW, Suite 202
Washington, DC  20037
(202) 994þ2417
(202) 994þ0899 (FAX)

Donald A.B. Lindberg, M.D.
Director
National Library of Medicine
National Institutes of Health
Building 38, Room 2E17
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ6221
(301) 402þ4100
(301) 496þ4450 (FAX)

Vincent J. Lynch, D.S.W.
Principal Organizer
The International Conference on Social Work and 
   HIV/AIDS
Boston College Graduate School of Social Work
McGuinn Hall
140 Commonwealth
Chestnut Hill, MA  02167
(617) 552þ4038
(617) 552þ3199 (FAX)

Abe Macher, M.D.
Medical Consultant
AIDS Education and Training Centers Program
U.S. Public Health Service
6708 Greyswood Road
Bethesda, MD  20817
(301) 443þ6364
(301) 443þ1719 (FAX)

Jillian Mackin
National Association of People With AIDS
1413 K Street, NW, 10th Floor
Washington, DC  20005
(202) 898þ0414
(202) 898þ0435 (FAX)

Geri Maiatico, M.S.N.
Section Chief
Community Programs for Clinical 
   Research on AIDS
Division of AIDS
National Institute of Allergy and Infectious 
   Diseases
National Institutes of Health
6003 Executive Boulevard
Rockville, MD  20852
(301) 496þ0701
(301) 402þ3171 (FAX)

John S. Makulowich, P.A.
The Writers Alliance, Inc./AIDS Patient Care
12008 Golden Twig Court
Gaithersburg, MD  20878
(301) 926þ4447
(301) 948þ8028 (FAX)

Richard Marlink, M.D.
Executive Director
Harvard AIDS Institute
8 Story Street
Cambridge, MA  02138
(617) 495þ0478
(617) 495þ2863 (FAX)

Sharon Marsh, R.N.
Manager
AIDS Clinical Trials Information Service (ACTIS)
P.O. Box 6421
Rockville, MD  20849þ6003
(301) 251þ5750
(301) 738þ6616 (FAX)

Linda K. Matocha, R.N., Ph.D.
Associate Professor and Chairperson
Department of Nursing Science
University of Delaware, College of Nursing
Newark, DE  19716
(302) 831þ2193
(302) 831þ2382 (FAX)

Sara N. McLanahan, M.L.S.
Library Services Director
The National Hemophilia Foundation
110 Greene Street, Suite 303
New York, NY  10025
(212) 431þ8541, Ext. 3049
(212) 431þ0906 (FAX)

Ronnie M. Mealy
Executive Director
Carl Vogel Foundation, Inc.
1413 K Street, NW, 3rd Floor
Washington, DC  20005
(202) 289þ4898
(202) 789þ2599 (FAX)

Robert Mehnert
Chief
Office of Public Information
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ6308
(301) 496þ4450 (FAX)

Jeffrey A. Meyer, M.D., M.P.H.
AIDS Information Manager
AIDS Helpline for Health Professionals
AIDS ETC for Texas and Oklahoma
University of Texas
P.O. Box 20186 (RAS E335)
Houston, TX  77225
(713) 794þ1760
(713) 794þ4877 (FAX)

Renee Michaud
Friends of the National Library of Medicine
Suite 200
1555 Connecticut Avenue
Washington, DC  20036
(202) 462þ9600
(202) 462þ9043 (FAX)

Diane W. Miller
Chief
Scientific Communications Branch
National Institute on Alcohol Abuse
  and Alcoholism
National Institutes of Health
Parklawn Building, Room 16Cþ14
5600 Fishers Lane
Rockville, MD  20857
(301) 443þ3860
(301) 443þ6077 (FAX)

James A. Miller
Associate Administrator
Office of Communications
Department of Health and Human Services
Substance Abuse and Mental Health
  Services Administration
Parklawn Building, Room 13C05
5600 Fishers Lane
Rockville, MD  20857
(301) 443þ8956
(301) 443þ9050 (FAX)

Bernadine A. Moore
Chief, Public Information Branch
Office of Communications
Office of the Director
National Institutes of Health
Building 31, Room 2Bþ10
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ1766
(301) 402þ0395 (FAX)

COL Jacqueline Morgan
Associate Director
Air Force Medical Operations Agency/SGP
170 Luke Avenue, Suite 400
Bolling Air Force Base
Washington, DC  20332þ5113
(202) 767þ1849

Richard Mowery, Ph.D.
Director
Division of Collaborative Clinical Research
National Eye Institute
National Institutes of Health
Executive Plaza South, Suite 350
6120 Executive Boulevard
Rockville, MD  20892
(301) 496þ5983
(301) 402þ0528 (FAX)

Alexander Moy, M.D.
Community Provider AIDS Training Project
University of California, San Francisco
Building 80, Ward 83, Room 314
San Francisco General Hospital
995 Potrero Avenue
San Francisco, CA  94110
(415) 206þ5081
(415) 476þ3454 (FAX)

Judy Murphy
Deputy Chief
Office of Communications
National Institute of Allergy and Infectious 
   Diseases
National Institutes of Health
Building 31, Room 7A50
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ5717
(301) 402þ0120 (FAX)

Joan Nolan
Community and Professional Education Branch
National Institute on Drug Abuse
National Institutes of Health
Parklawn Building, Room 10A39
5600 Fishers Lane
Rockville, MD  20857
(301) 443þ6441
(301) 443þ7397 (FAX)

Antonia Novello, M.D.
Surgeon General of the United States
U.S. Public Health Service
200 Independence Avenue, SW
Washington, DC  20201
(202) 690þ6467
(202) 690þ5810 (FAX)

June Osborn, M.D.
University of Michigan
School of Public Health
109 South Observatory Street
Ann Arbor, MI  48109þ2029
(313) 763þ5454
(313) 763þ5455 (FAX)

John Owens, M.D.
Medical Advisor
Home Nutrition Services HIV-NET BBS
6500 Fannin, Suite 1001
Houston, TX  77030
(713) 790þ1873
(713) 790þ0261 (FAX)

Joseph Palca
National Public Radio
2025 M Street, NW
Washington, DC  20036
(202) 822þ2775
(202) 822þ2329 (FAX)

John J. Park, M.S.A., Ph.D.
Surveillance Coordinator
Prince George's County Health Department
7409 Cinnabar Terrace
Gaithersburg, MD  20879
(301) 386þ0210

Richard P. Perkins, M.D.
Professor
OB/GYN Department
University of Nevada School of Medicine
2040 W. Charleston Boulevard, Suite 200
Las Vegas, NV  89102
(702) 383þ2271
(702) 486þ3693 (FAX)

Michael Pizzi, M.S., OTR/L, C.H.E.S.
Founder
Positive Image and Wellness, Inc. and
The National Center for Wellness and Health Promotion
13100 New Hampshire Avenue
Silver Spring, MD  20904
(301) 236þ4614
(301) 236þ4609 (FAX)

Ellen Pollack
Public Affairs Specialist
Office of Research on Womenþs Health
Office of the Director
National Institutes of Health
Building 1, Room 201
9000 Rockville Pike
Bethesda, MD  20892
(301) 402þ1770
(301) 402þ1798 (FAX)

Ronald Porter
Site Coordinator
La Frontera Center
502 West 29th Street
Tucson, AZ  85713
(602) 770þ7418
(602) 770þ7419 (FAX)

David R. Price
Biomedical Information Specialist
Burroughs Wellcome Company
3030 Cornwallis Road
Research Triangle Park, NC  27709
(919) 248þ4378
(919) 406þ5207 (FAX)

Helene Quick
HIV/AIDS Outreach Manager
Johnson, Bassin and Shaw, Inc.
8630 Fenton Street, Suite 1200
Silver Spring, MD  20910
(301) 495þ1080
(301) 587þ4352 (FAX)

Ronald A. Rader, M.L.S.
Editor
Antiviral Agents Bulletin
Biotechnology Information Institute
1700 Rockville Pike, Suite 400
Rockville, MD  20852
(301) 424þ0255
(301) 881þ6898 (FAX)

Patricia S. Randall
Director
Office of Communications
National Institute of Allergy and
   Infectious Diseases
National Institutes of Health
Building 31, Room 7Aþ50
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ5717
(301) 402þ0120 (FAX)

Linda Reck
Senior Program Analyst
Office of AIDS Research
National Institutes of Health
Building 31, Room 5C06
Bethesda, MD  20892
(301) 496þ0358
(301) 402þ7769 (FAX)

Bert Resimont
Office of the Assistant Secretary for Health
National AIDS Program Office
Hubert H. Humphrey Building, Room 738G
200 Independence Avenue, SW
Washington, DC  20201
(202) 690þ6248
(202) 690þ6584 (FAX)

Louise Rice, R.N., B.S.N.
Associate Director of Education
AIDS Action Committee
131 Clarendon Street
Boston, MA  02116
(617) 437þ6200, Ext. 264
(617) 437þ6445 (FAX)

Linda T. Richardson
Program Coordinator
AIDS Transportation Program
People Aiding Travelers and the Homeless (PATH)
111 Park Avenue
Baltimore, MD  21201
(410) 685þ3569
(410) 838þ8020 (FAX)

K. Duanne Riddle, Ph.D.
Clinical Psychologist
Contractor, Private Practice
P.O. Box 74882
Washington, DC  20056
(301) 295þ2579

Ryland Roane, Jr.
Bureau of STD and AIDS
Virginia Department of Health
Main Street Station, Room 112
P.O. Box 2445
Richmond, VA  23218
(804) 786þ0877
(804) 225þ3518 (FAX)

John Ruffin, Ph.D.
Associate Director for Minority Programs
National Institutes of Health
Building 1, Room 260
Bethesda, MD  20892
(301) 402þ1366

Caitlin Ryan, M.S.W.
Chief, Office of AIDS Administration
District of Columbia Department of Health
  and Human Services
1660 L Street, NW, Suite 700
Washington, DC  20036
(202) 673þ3679
(202) 724þ3795 (FAX)

Anna Sabasteanski
Macmillian New Media
124 Mount Auburn Street
Cambridge, MA  02138
(617) 661þ2955
(617) 868þ7738 (FAX)

Paul Schapiro, L.C.S.W.-C
Psychotherapist
Prince George's County Health Department
Division of HIV/AIDS
3003 Hospital Drive
Cheverly, MD  20785þ1196
(301) 386þ0210
(301) 386þ3531 (FAX)

Donald A. Schneider, D.D.S., M.P.H.
AIDS Coordinator
Agency for Health Care Policy and Research
2101 East Jefferson Street, Suite 502
Rockville, MD  20852
(301) 227þ8354, Ext. 126
(301) 227þ8155 (FAX)

Harold M. Schoolman, M.D.
Deputy Director for Research and Education
National Library of Medicine
National Institutes of Health
Building 38, Room 2E17
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ5967
(301) 496þ4450 (FAX)

Neil Schram, M.D.
Chairman, AIDS Task Force
American Association of Physicians for Human Rights
c/o Kaiser Permanente Medical Group
25825 South Vermont Avenue
Harbor City, CA  90710
(310) 517þ3228
(310) 517þ4077 (FAX)

Cornell Scott
Executive Director
Hill Health Center
New Haven, CT  06519
(203) 777þ1134
(203) 787þ5510 (FAX)

Elliot R. Siegel, Ph.D.
Associate Director for Health Information Programs          
Development
National Library of Medicine
National Institutes of Health
Building 38, Room 2S20
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ8834
(301) 496þ4450 (FAX)

Elizabeth M. Sigler
Manager
Pharmaceutical and Research Communications
Bristol-Myers Squibb Company
345 Park Avenue, 21þ60
New York, NY  10154
(212) 546þ5764
(212) 546þ2962 (FAX)

Joanne Silberner
Health Policy Correspondent
National Public Radio
2025 M Street, NW
Washington, DC  20036
(202) 822þ2775
(202) 822þ2329 (FAX)

Warner V. Slack, M.D.
Editor-in-Chief
Center for Clinical Computing
Harvard Medical School
350 Longwood Avenue
Boston, MA  02115
(617) 732þ5925
(617) 277þ9792 (FAX)

Elaine Sloand, M.D.
Special Assistant to the Director
National Heart, Lung, and Blood Institute
National Institutes of Health
Building 31, Room 5A50
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ3245
(301) 402þ3686 (FAX)

Kent A. Smith
Deputy Director
National Library of Medicine
National Institutes of Health
8600 Rockville Pike
Bethesda, MD  20894
(301) 496þ6661
(301) 496þ4450 (FAX)

Richard Smith
National Association of People With AIDS
1413 K Street, NW, 10th Floor
Washington, DC  20005
(202) 898þ0414
(202) 898þ0435 (FAX)

Saragur Srinidhi
NASA Lewis Research Center
Mail Stop 142þ1
21000 Brookpark Road
Cleveland, OH  44135
(216) 443þ8987
(216) 433þ8000 (FAX)

Nancy Stanisic
Health Programs Coordinator
Food and Drug Administration
5600 Fishers Lane, HFþ12, Room 12A40
Rockville, MD  20857
(301) 443þ0104
(301) 443þ4555 (FAX)

Judith Stein
Chief, Scientific Reporting Branch
National Eye Institute
National Institutes of Health
Building 31, Room 6Aþ32
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ5248
(301) 402þ1065 (FAX)

Judy A. Stephenson
Project Director
AIDS Information Project
ETC AIDS Resource Network
c/o ECAETC
Department of Preventive Medicine
University of Kentucky
P.O. Box 4409
Lexington, KY  40544þ4409
(606) 257þ1243
(606) 257þ2990 (FAX)

Vickie Strange
HANDI Advisory Committee and Womenþs 
   Advisory Committee
National Hemophilia Foundation
3114 Maple Avenue
Efland, NC  27243
(919) 563þ6863

Ann Strong
Macmillian New Media
124 Mount Auburn Street
Cambridge, MA  02138
(617) 661þ2955
(617) 868þ7738 (FAX)

Mary Sullivan
Public Affairs Specialist
National Institutes of Health
Building 31, Room 2Bþ10
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ1766
(301) 402þ0395 (FAX)

Susan K. Sverha
Department of Veterans Affairs
Office of Academic Affairs, 145C
Educational Programs Division
810 Vermont Avenue, NW
Washington, DC  20420
(202) 535þ7104
(202) 535þ7522 (FAX)

Anne Thomas
Director of Information
Office of Communications
National Institutes of Health
Building 1, Room 344
Bethesda, MD  20892
(301) 496þ4461
(301) 496þ0017 (FAX)

Russell Toth
Director, Communication and Information Services
Computerized AIDS Information Network (CAIN)
1625 North Hudson Avenue
Los Angeles, CA  90028
(213) 993þ7415
(213) 993þ7419 (FAX)

Lynn U. Turman, M.S.L.S.
Outreach Services Librarian
Tompkins-McCaw Library
Medical College of Virginia
Virginia Commonwealth University
Box 582
Richmond, VA  23298þ0582
(804) 786þ0823
(804) 371þ6089 (FAX)

Melissa Turner, M.S.W.
Clinical Social Worker
Community Programs for Clinical Research on AIDS
VA Medical Center
50 Irving Street, NW, Suite 151B
Washington, DC  20422
(202) 745þ8695
(202) 332þ2797 (FAX)

Cheryl Tyiska
Director of Victim Services
National Organization for Victim Assistance
1757 Park Road, NW
Washington, DC  20010
(202) 232þ6682
(202) 462þ2255 (FAX)

Sandra Vining-Bethea
Project Director
Bridgeport Womenþs Project
2414 Main Street
Bridgeport, CT  06606
(203) 368þ3634
(203) 335þ6677 (FAX)

Robert A. Washington, Ph.D.
Consultant
St. Francis Center
5135 MacArthur Boulevard, NW
Washington, DC  20016
(202) 363þ8500

Beth Wescott, M.L.S.
CDC National AIDS Clearinghouse
Centers for Disease Control and Prevention
P.O. Box 6003
Rockville, MD  20849þ6003
(301) 251þ5775
(301) 738þ6616 (FAX)

Anne White-Olsen, M.L.S.
National Library of Medicine
National Institutes of Health
Building 38A, 4th Floor
8600 Rockville Pike
Bethesda, MD  20894
(301) 402þ1076
(301) 496þ0822 (FAX)

Sherry D. White
Clinical Trials Operations Specialist
Treatment Research Operations Program
Operations and Data Management Branch
Division of Acquired Immunodeficiency Syndrome
National Institute of Allergy and Infectious Diseases
National Institutes of Health
Solar Building, Room 2Bþ24
6003 Executive Boulevard
Rockville, MD  20852
(301) 496þ8215
(301) 480þ5703 (FAX)

Jack Whitescarver, Ph.D.
Deputy Director
Office of AIDS Research
National Institutes of Health
Building 1, Room 201
Bethesda, MD  20892
(301) 496þ0357
(301) 402þ2047 (FAX)

Judith K. Williams, Ph.D.
Coordinator, HIV Counseling Program
NIH Clinical Center
Building 10, Room 1C144
9000 Rockville Pike
Bethesda, MD  20892
(301) 496þ8331
(301) 402þ1573 (FAX)

Reggie Williams
Executive Director
National Task Force on AIDS Prevention
631 OþFarrell Street
San Francisco, CA  94109
(415) 749þ6700
(415) 749þ6706 (FAX)

Anne Wilson
Aspen Systems Corporation
1600 Research Boulevard
Rockville, MD  20852
(301) 251þ5160
(301) 738þ6616 (FAX)

Michelle Wilson
Executive Director
The Positive Woman, Inc.
1959 4th Street, NE
Washington, DC  20002þ1211
(202) 529þ5447
(202) 529þ5445 (FAX)

Henry Wray, D.D.S.
Whitman-Walker Clinic
1407 S Street, NW
Washington, DC 20009
(202) 797þ4458
(202) 797þ3504 (FAX)

Janet M. Young, Ph.D.
Biologist
Resources and Centers Branch
Division of AIDS
National Institute of Allergy and Infectious 
   Diseases
National Institutes of Health
Solar Building, Room 2B28
6003 Executive Boulevard
Bethesda, MD  20892
(301) 402þ0755
(301) 480þ5703 (FAX)

***************

GLOSSARY


ACTG
AIDS Clinical Trials Group is composed of a number of U.S.
medical centers that evaluate treatment for HIV and
HIV-associated infections. ACTG studies are sponsored by the
National Institute of Allergy and Infectious Diseases (see)

Affected Community
HIV-positive people, persons living with AIDS, and other
individuals, including their families, friends, and advocates,
directly impacted by HIV and its physical, psychological, and
sociological ramifications

Agency for Health Care Policy and Research (AHCPR)
An agency of the Public Health Service that supports activities
to enhance health care services and improve access to them

AHCPR
Agency for Health Care Policy and Research (see)

AIDS
Acquired Immunodeficiency Syndrome, an immune system disease
caused by the human imunodeficiency virus in which resistance of
the body to certain infections and cancers is lowered

AIDSDRUGS
National Library of Medicine (see) online database with
references to drugs undergoing testing against AIDS, ARC, and
related opportunistic infections

AIDSLINE
National Library of Medicine (see) online database with citations
and abstracts covering the published scientific/medical
literature on AIDS and related topics

AIDSTRIALS
National Library of Medicine (see) online database of clinical
trials of agents under evaluation against HIV infection, AIDS,
and related opportunistic infections

AIDS Knowledge Base
Full-text electronic database--available in printed as well as in
electronic form--on AIDS, produced and maintained by physicians
and other health care professionals. Edited by P.T. Cohen, Merle
Sande, and Paul Volberding

AIDS Research Advisory Committee
Advisory board that advises and makes recommendations to the
Director, NIAID (see) on all aspects of research on HIV and AIDS,
including treatment research, vaccine development, pathogenesis,
and epidemiology

AIDS Service Organization (ASO)
Health associations, support agencies, and other services active
in the prevention or treatment of AIDS

Allied Health Care Providers
Professionals who provide health-related, usually nonmedical
services and who are generally not considered þhealth care
providers.þ Examples include social service workers,
nutritionists, and case managers

Alternative Media
Nontraditional mechanisms (e.g., local cable TV) for
disseminating news and information to the public, usually to
special target populations such as racial or ethnic minorities,
or groups such as gays, lesbians, and bisexuals

Alternative Therapy
In Western countries, alternative therapy refers to any type of
medicine that supplements biomedicine or allopathic medicine. In
other parts of the world, where traditional medicine
predominates, the term may refer to biomedicine itself

Antiretroviral Agents
Substances used against retroviruses such as HIV

ARC
AIDS-Related Complex. One or a set of symptoms, occurring in a
person with HIV, which is not classified as an AIDS-defining
condition 

ASO
AIDS Service Organization (see)

AZT
Azidothymidine (also called zidovudine, Retrovir) -- one of the
first drugs used against HIV infection. AZT is a nucleoside
(genetic building block) analog that suppresses replication of
HIV

BBS
Bulletin Board System (see Electronic Bulletin Board System)

CBO
Community-Based Organization (see)

CDC
Centers for Disease Control and Prevention (see)

CDC National AIDS Clearinghouse
The CDC's (see) comprehensive reference, referral, and
publication distribution service for HIV and AIDS information.
The Clearinghouse works in partnership with national, regional,
State, and local organizations that develop and deliver HIV
prevention programs and services

Centers for Disease Control and Prevention (CDC)
Centers for Disease Control and Prevention, a Public Health
Service agency responsible for assessing status and
characteristics of AIDS epidemic and prevalence of HIV infection.
CDC supports design, implementation, and evaluation of prevention
activities, and maintains various HIV/AIDS information services

Clinical Alert
A mechanism, recently adopted by NIH in conjunction with the
editors of several biomedical journals, for urgent cases in which
timely and broad dissemination of results of clinical trials
could prevent morbidity and mortality. The Clinical Alert does
not become a barrier to subsequent publication of the full
research paper.  Clinical alerts are widely distributed
electronically by NLM and through standard mailings


Clinical Practice Guidelines
Standards for physicians to adhere to in prescribing care for a
given condition or illness

Clinical Trials
Controlled trials set up to evaluate the toxicity and
effectiveness of drugs or biological agents (e.g., vaccines) in
humans 

Community-Based Organization (CBO)
A locally based service organization that provides social
services at the community level

Community Programs for Clinical Research on AIDS (CPCRA)
National Institute for Allergy and Infectious Diseases (see)
initiative to broaden the base of clinical investigations by
involving community physicians in AIDS research and trials

Concorde Study
Joint French/British clinical trial of AZT (see) in asymptomatic,
HIV-positive individuals

CPCRA
Community Program for Clinical Research on AIDS (see)

Cultural Sensitivity
An expressed awareness and understanding of psychosocial
differences among communities of different ethnic or racial
background, sexual orientation, socioeconomic status, or
geographic location

Database
An organized compilation of information, usually maintained in a
computer system

DATRI
Division of AIDS Treatment Research Initiative, established by
NIAID (see), is a national network to test new therapies for
HIV-infected persons. Its hallmark is the ability to rapidly
conduct clinical trials and related research that evaluates new
therapies and novel treatment approaches for those with HIV
disease

ddC
Dideoxycytidine (zalcitabine, Hivid) -- a drug (nucleoside
analog) that inhibits the replication of HIV

ddI
Dideoxyinosine (didanosine, Videx) -- a drug (nucleoside analog)
that inhibits the replication of HIV

Detailing
Use of pharmaceutical company representatives (þdetail menþ) to
bring information about a company's drug products to doctors'
offices

Educational Materials Database
Maintained by CDC's National AIDS Clearing- house (see), the
database is a collection of information about hard-to-find
educational materials tailored to a variety of audiences and
focusing on different aspects of HIV infection and AIDS

Efficacy Stage
The stage of a clinical trial (see) that tests the effectiveness
(rather than the toxicity) in humans of the drug or substance
under study

Electronic Bulletin Board System (BBS)
Computerized information services that are accessed by computers
with modems (computer communication devices) linked to
telephones. In the HIV/AIDS area, BBS's have become essential
means for obtaining current information as well as providing
interactive forums for networking among professionals and members
of the affected community

Electronic Index
Index to an information compilation; the index is built,
maintained, and searchable in a computerized system

Electronic Information Systems
Computerized information systems, including databases, online
retrieval services, electronic bulletin boards, facsimile
services, etc.

End-Stage Disease
Stage of advanced illness at which there is reasonable certainty
that the patient will not recover

Epidemic
A disease affecting at the same time a large number of persons in
a locality, and spreading from person to person; the disease is
not permanently prevalent in that locality

Epidemiology
The branch of medical science that deals with the incidence,
distribution, and control of a disease in a population

ETC's
AIDS Education & Training Centers supported by HRSA (see)

FDA
Food and Drug Administration (see)

Folk Healer
One who practices healing using treatments based on folk medicine
(see)

Folk Medicine
The mode of treatment based on traditional beliefs that is common
to a group of people. It need not involve a specific medical
system, but relates rather to traditional use within a group or
tribe of people

Food and Drug Administration (FDA)
The PHS agency responsible for ensuring the safety and
effectiveness of drugs, biologics, vaccines, and medical devices
used in the diagnosis, treatment, and prevention of HIV
infection, AIDS, and AIDS-related opportunistic infections. The
FDA also works with the blood banking industry to safeguard the
Nation's blood supply

Full Text Databases
Databases (usually computerized) containing the entire text of a
document, not merely abstracts or citations. Searching full-text
databases usually implies the ability to search for words
occurring anywhere in the text of the document

Gatekeeper
Person or organization that facilitates access to an information
source, system, or service

Health Resources & Services Administration (HRSA)
A PHS agency that administers education and training programs for
health care providers and community service workers who care for
AIDS patients. HRSA also administers programs to demonstrate how
communities can organize their health care resources to develop
an integrated, comprehensive system of care for those with AIDS
and HIV 
infection

Hemophiliac
Person suffering from hemophilia, a condition of males
characterized by a tendency to bleed immoderately, as from an
insignificant wound; caused by improper coagulation of the blood

Herbalist
Specialist in medicinal plant products to treat various ailments.
Herbalists tend to compound and prescribe much as prepatent drug
pharmacists did

High Performance Computing Systems
State-of-the-art computing systems under development as part of
the High Performance Computing Act of 1991, which funded research
and development of high-capacity computers and high-speed
networks

HIV
Human immunodeficiency virus, retrovirus (see) considered to be
the causative agent of AIDS

HMO
Health maintenance organization

Hotline
Telephone-based information service -- normally for urgent
inquiries -- staffed by persons knowledgeable in a special
subject area such as HIV infection. Responses to inquiries are
provided immediately

HRSA
Health Resources and Services Administration (see)

Indian Health Service (IHS)
PHS agency providing a comprehensive health service delivery
system for American Indians and Alaskan Natives

Information Kiosk
Usually a collection of pamphlets and brochures displayed on a
rack in a physician's office, clinic, pharmacy, shopping center,
or other public place

Inreach
Effort to obtain knowledge about the results or effects of an
activity or service (also referred to as obtaining feedback)

INSERM
France's Institute of Health and Medical Research

Intent to treat
Analysis of clinical trial results that includes all data from
all patients in the groups to which they were randomized even if
they never received the treatment


Internet
The worldwide electronic network of networks that connects
computer systems at universities, research centers, other
institutions, and commercial organizations. The Internet provides
file transfer, remote login, electronic mail, news, and other
services

Jargon-Free
Expressed in nontechnical language

Kemron
Low-dose, natural human alpha interferon, reported to improve
HIV-related symptoms. Alpha interferon is one of three
interferons, natural human proteins produced by the body in
response to viral infections

MEDLARS
Medical Literature Analysis and Retrieval System--the cluster of
online information services provided by the National Library of
Medicine (see)

Methadone
Synthetic narcotic drug used in the treatment of 
addiction to heroin and other opium-derived narcotics

National AIDS Clearinghouse
CDC National AIDS Clearinghouse (see)

National Cancer Institute (NCI)
An NIH institute with the overall mission of conducting and
supporting research, training, and health information
dissemination with respect to the causes, diagnosis, and
treatment of cancer. NCI performs these functions for cancers
related to HIV infection

National Center for Research Resources (NCRR)
An NIH organization that conceives and develops a wide variety of
research resources and ensures their availability, thereby
strengthening and enhancing biomedical research supported or
performed by NIH. NCRR supports a variety of HIV-related studies

National Commission on AIDS
Commission formed under Public Law 100þ607 for the purpose of
promoting the development of a national consensus on policy
concerning AIDS and for studying and making recommendations for a
consistent national policy concerning the HIV epidemic

National Institute of Allergy and Infectious Diseases (NIAID)
An NIH institute that conducts and supports research to study the
causes of allergic, immunologic, and infectious diseases, and to
develop better means of preventing, diagnosing, and treating
illnesses. NIAID is responsible for the federally funded national
AIDS research program

National Institute of Child Health and Human Development (NICHD)
An NIH institute that conducts and supports research on the
reproductive, developmental, and behavioral processes that
determine the health of children, adults, families, and
populations. Thus, NICHD supports clinical research related to
the transmission of HIV from infected mothers to offspring, the
progression of disease in HIV-infected infants and children, and
the testing of potential therapies and preventatives for this
population

National Institutes of Health (NIH)
A multi-institute agency of the Public Health Service, NIH is the
Federal focal point for health research. It conducts research in
its own laboratories and supports research in universities,
medical schools, hospitals, and research institutions throughout
this country and abroad

National Institute of Mental Health (NIMH)
An NIH institute. NIMH conducts and supports research on the
neuroscientific, behavioral, and psychosocial aspects of HIV
infection

National Institute on Alcoholism and Alcohol Abuse (NIAAA)
An NIH institute. NIAAA conducts and supports HIV-related alcohol
research in basic science, epidemiology, and prevention. Studies
have shown that alcohol consumption can cause alterations of the
immune system that compromise host defenses against HIV infection

National Institute on Drug Abuse (NIDA)
An NIH institute. NIDA conducts and supports a wide range of AIDS
research. HIV infection is directly related to injection drug use
through blood contamination of shared equipment (e.g., needles)

National Library of Medicine (NLM)
An NIH institute. NLM is one of three U.S. national libraries. It
is the world's largest research library in a single scientific
and professional field (i.e., medicine). The library provides
electronic and printed information services relating to HIV/AIDS
(e.g., AIDSLINE, AIDSTRIALS, AIDSDRUGS, and the AIDS
Bibliography)

National Research and Education Network (NREN)
National Research and Education Network, a U.S. effort to combine
electronic networks, connecting research centers and educational
institutions into a single, high-speed network. NREN is part of
the Nation's High Performance Computing Systems (see)

Natural History Studies
Epidemiologic surveys of the progression of an illness

NCI
National Cancer Institute (see)

Network
Computerized resources in different geographic areas linked by
electronic communication systems (e.g., telephone, cable). In
another usage, the term network (or networking) also refers to
people meeting or linking up with other people, usually in
professional settings such as conferences

NIAID
National Institute of Allergy and Infectious Diseases (see)

NIH
National Institutes of Health (see)

NIH Office of Communications
The unit in the NIH Director's office that is responsible for
overall direction, planning, and coordination of NIH information
activities

NLM
National Library of Medicine (see)

Note to Physicians
An NIH document, sent to physicians, which reports on the results
or findings of a clinical trial or trials and explains the
implication these findings have on recommended clinical practices

NREN
National Research and Education Network (see)

Nurse Practitioner
A Registered Nurse with an advanced degree who evaluates,
diagnoses, and treats patients under the auspices of a licensed
physician

OAR
Office of AIDS Research (see)

Office of AIDS Research (OAR)
Organization in the NIH Director's office that coordinates the
scientific, budgetary, legislative, and policy elements of the
NIH AIDS research program

þOne-stop-shopping Modelþ for 
Information Service
The arrangement whereby a single source or information provider
supplies all the information resources necessary for a given
subject area (such as HIV/AIDS)

Outreach
Policies or activities that involve deliberate reaching out to
particular communities with information or services

Pandemic
A disease prevalent throughout an entire country, continent, or
the whole world

PDQ
Physician Data Query System -- a National Cancer
Institute-maintained electronic information and referral system,
available through (among others) the National Library of
Medicine. PDQ provides data on cancer, prognosis, treatment,
investigational therapies, experimental drugs, and physicians and
health care centers involved in cancer care. PDQ can be thought
of as an example of the þone-stop-shopping modelþ (see) for
information services

Peer review
The process by which new scientific or medical findings announced
by one researcher are reviewed by other scientists or physicians
before these findings are published

PETT
Public Education Technology Transfer (see)

PHS
Public Health Service (see)

POPLINE
Online database on NLM system with citations and abstracts to
worldwide literature on family planning and population. Includes
such areas as research in human fertility, contraceptive methods,
maternal and child health care, and AIDS in developing countries.
Produced by Johns Hopkins Population Information Program

Prophylaxis
Treatment that helps to prevent a disease or condition before it
occurs or recurs

PsycINFO
Online bibliographic database covering the worldwide literature
in psychology and the behavioral sciences. Available through
several online service providers, including BRS and DIALOG

Public Education Technology Transfer Project (PETT)
Project to improve access to information about clinical trials
and HIV/AIDS among people who are at risk for, or are involved
in, the lives of people with HIV/AIDS

Public Health Service
A multiagency (e.g., CDC, HRSA, NIH) organizational component of
the U.S. Department of Health and Human Services

Public Information Officer
A spokesperson representing an organization such as a government
agency whose function it is to represent that organization to the
media

Retrovirus
A type of virus that invades cells where it converts its genetic
information, RNA (ribonucleic acid), into viral DNA
(deoxyribonucleic acid). This virus' unusual mode of replication
introduces a high rate of genetic mutation that contributes to
its ability to evade defense by the body's immune system and--
eventually-- the action of drugs

Sci.med.aids
A news group on the Internet (see) specializing in AIDS-related
information

Sidebar
Journalistic term for additional explanatory information about a
concept or an article, usually printed in a box on the side of
the article

Sociological Abstracts
Online bibliographic database with citations and abstracts to
over 1,500 journals in the field of sociology and related
disciplines in the social and behavioral sciences. Available
through several online service providers including BRS and 
DIALOG 

Sound Bite
A short phrase, sentence, or collection of sentences (sometimes
taken out of context) quoted on the radio or on television

Standards of Care
Treatment regimen or medical management based on state-of-the-art
patient care

STD
Sexually transmitted disease

Underserved Areas
Populations or geographic areas that are not provided with
adequate services

USDA Extension Service
United States Department of Agriculture Cooperative Extension
System, a national educational network which is a partnership of
the USDA, State land grant universities, and county governments.
Its mission is to help people improve their lives through an
educational process that uses scientific knowledge focused on
issues and needs

VA
Department of Veterans Affairs (formerly Veterans
Administration). The Department conducts AIDS prevention programs
and provides medical care to veterans with AIDS

Warmline
A telephone reference service for nonurgent inquiries (as
contrasted with hotline)